HomeStatus Updates (Archive 2010)CMH Pulmonary Artery Reconstruction

CMH Pulmonary Artery Reconstruction

Sunday, November 28– home sweet home

‎Monday, ‎November ‎29, ‎2010, ‏‎1:58:30 AM | smolby@gmail.com (Sean Molby)                        

Okay,   so again I have been completely remiss in my duties of updating the website   BUT in my defense I have had quite a lot going on….With   facebook and word of mouth I sometimes forget that a lot of you are still   waiting on these updates for information on Tristan as his site IS how you   find out what is going on so I truly do apologize for not getting an update   up sooner.For   those that don’t know Tristan is home and recovering wonderfully, this   surgery has been the easiest on him recovery wise. Even though it was still a   big surgery he managed to pull through like a champ. To recap, this last   surgery was a pulmonary artery reconstruction. The purpose was to open up   Tristan’s left pulmonary artery so that he could get adequate blood flow to   his lungs. Even with his closed PA T was doing amazingly well as he compensated   by basically growing additional veins, called collaterals, to supply the   blood needed for his left lung to function properly-this was a life saver for   Tristan, literally, as often times these babies do not survive or have major   complications if this happens and unfortunately, with the Hybrid kiddos, they   are seeing more and more obstructed pulmonary arteries.

For   Tristan’s surgery they had to go through his ribs and breast bone once again,   so this was his 3rd open chest operation, he did have to go on   by-pass but it was what they call a warm by-pass, which is much safer. They   did not have to cool down his body and at no time did they stop his heart.   The by-pass was for his lungs and he was only on it for about 45 minutes.   They were able to completely open up his left pulmonary artery and it turned   out it was a clot causing all the problems. They were also able to close off   several of the unneeded collateral veins he had grown. They also extended T’s   PA so that the blood would be able to flow through a lot easier (his PA was   kind of curved so they straightened it out).

His   recovery as always was tense and scary however he again managed to not need   ECMO and they were able to extubate him within 24 hours of being intubated;   and for the fourth time in his life, my son had to relearn how to pump his   blood throughout his body. He surpassed everyone’s expectations and was on   the floor within 2 days post op and back home in 5. It was rather shocking as   we are usually still intubated on the 5th day.

They   did decide to keep Tristan on his Lovenox shots and also to add aspirin. So   that is kind of scary as being on both blood thinners diminishes Tristan’s   ability to clot at all. (Lovenox is more for thinning the blood in his veins   and Aspirin is more for thinning the blood going through the arteries) with   both his veinus and arterial blood being thinned it makes it very risky for   Tristan, but they feel it is the best route for at least the next month or   so. After that they will reevaluate and then possible take him off the   Lovenox. On top of that he is still behind on his vaccinations so for the   next month we will be hoarding out at home in attempts to keep Tristan as   safe as possible. We won’t be taking him out in public until his vaccinations   are current and I won’t risk him being in a car (there are a lot of crazy   drivers out there and even just a fender bender could cause internal bleeding   and severe or even fatal complications) to me it is just not worth the risk   so we will just stick with our walks in the park and our ventures in his   stroller and to and from doctors appointments. So anyone who is healthy will   be more than welcome to come by as I am sure I will be close to going stir   crazy by the 2nd week! J

This   last week we have simply enjoyed the gift of having our Tristan home with us   for the Thanksgiving holiday and we could not have asked for anything more.   The girls were ecstatic that they were able to come home so soon and things   have been fairly normal except for Ella has a slight head cold that she has   unfortunately passed on to Tristan. They are both doing okay for the moment.   Benadryl seems to be helping Ella and with Tristan we have had to start   suctioning out his nose again. He goes back in to see ENT (ears, nose, throat   docs) on Tuesday so I will have them look and he also will get his staples   out and have a cardiology follow up Tuesday so I will basically be asking   everyone what they think we should do for him. He has not been extra fussy   and he is sleeping fine-he is just a little more congested than normal.

We   are again having problems with him eating L Grrrrrrrrr…he actually did fine   the first day he was awake enough to try but I guess when they took him off   all his pain meds he decided it hurt to much to swallow so he just stopped. I   have gotten him to take his pacifier again and that took almost the whole   week we have been home but eating his baby food has not been such an easy   feat. I am hoping it is just the irritation from having the sinus drainage   and that it is just a minor setback. We won’t know for sure until he starts   to feel better.

Physically   he is doing REALLY well. He even pulled himself up to a sitting position from   a reclined one as I was holding him; it only slightly freaked me out. He is   sitting up better and better each day and his head control is back to normal,   well actually better than normal for him. The docs didn’t want me doing much   physical therapy until his staples are out so for the most part I have just   let Tristan do things that he seems comfortable doing. I have hopes that they   will be okay with us starting back up our daily exercises on Wednesday and   then Jaci, his PT, should be back from vacation next week and we can really   start working on making some developmental progress!

We   had a great Thanksgiving, very simple just us and the kids; although grandma   and grandpa stopped by later that night to play and have some dessert. Sean   and Briah did an hours worth of Black Friday shopping and then Briah got to   spend Friday evening, Saturday, and part of Sunday with her memaw, aunt   Shawna, and uncle Luc. Then grandma and grandpa came over again today to   spend some time with us! By the way thank you mom for helping me clean up all   the dishes. J

This   week should be fairly uneventful. Like I said we have lots of appointments on   Tuesday and then OT on Wednesday but other than that there should just be   lots of cuddling and being thankful for all that we have been blessed with so   far this year.

I   sincerely hope that everyone had a wonderful and family filled holiday.

Thanks   again for all the support everyone. I love you all.

Huge   heart hugs and thanks from me and my family!

♥Christy  

Sunday, November 21, 2010~waiting to go home

‎Monday, ‎November ‎22, ‎2010, ‏‎1:05:28 AM | smolby@gmail.com (Sean Molby)

Another   busy, eventful day today and Tristan is still doing remarkably well!They   pulled his draining tubes in his chest today. So that has helped a lot with   Tristan not being so uncomfortable. He also had several huge bowel movements,   FINALLY!!! That has helped with his pain and discomfort as well.His   has been in really good spirits today laughing and smiling a lot! He is off   all extra oxygen and is maintaining 79-86 oxygen saturation percentages and   he looks sooooo good. He is a nice pink color and he just looks like he feels   so much better.

We   are starting to have problems with him taking the pacifier again and baby   food. He wouldn’t take either all morning or afternoon. I did manage to get   him to eat a little bit of peas and applesauce this evening but he is still   refusing the pacifier L. Occupational therapy is supposed to come by tomorrow   morning so hopefully she will have some ideas. I am pretty sure the problem   is his throat is still a bit sore from being intubated and so he doesn’t want   to swallow as often as it would take if sucking on a paci. Before when he was   taking it he was on morphine and ativan and although his throat was still   sore I think the meds helped him to just not care as much. Now he is only on   oxycodone and he is only taking it about every 6 hours, they prescribed up to   every 4 hours as needed but he is doing okay with waiting till 6. In anycase   I it doesn’t help with the irritaion from being intubated-that just takes   time.

Overall   another happy day and hopefully we will be going home soon! Wish us luck

Till   tomorrow ♥Christy

Saturday November 20th 55+ hours post op

‎Sunday, ‎November ‎21, ‎2010, ‏‎9:15:43 AM | smolby@gmail.com (Sean Molby)

The   last 24 hours has been super busy so I will try to remember all that has   happened starting from the beginning…I   finally got to hold Tristan late last night for a little while. It was the   first time I had held him since Thursday at 7:45 AM. It felt soooo good to   have him back in my arms but unfortunately it was still a little   uncomfortable for him so I put him back in bed after only 5 minutes. LThey   started feeding him his formula again last night. We started slow as always   but he is already back up to his normal feeding amount, however we are   running it over an hour so as not to push him so hard. He also was started   back on his baby food. He didn’t take a lot. It was mostly to keep him   remembering that he actually has to eat in order to get full. We have been   making sure he has his pacifier with every feeding so as to encourage him not   to just sleep through it and think the food magically appears in his belly!   Overall he has done really good but just didn’t take a lot. They will start   full OT on Monday and we will also start trying the bottle again so wish us   luck with that!!

He   is in a lot of tummy pain right now because he is super constipated. We tried   doing a suppository but he kept pooping the suppository out before it had a   chance to help him poop, so I asked them to give him a dose of miralax which   really helped him along last time. Right now we are still waiting for the big   poop! J It is often hard for babies, well people in general, to get back to   regular bowel movements after deep sedation during surgery because the   sedation puts the bowels to sleep as well and then when they start adding in   pain meds it just compounds the prob. BUT hopefully the miralax will help and   he won’t have such tummy pains.

He   is doing okay tolerating his pain otherwise. He gets oxycodone about every 6   hours and then if he is having a hard time in between we have been   alternating with morphine, ativan, and tylenol. Considering, he really is not   getting that many pain meds any more especially compared to last surgery.

He   is still slightly bloated but it is slowly going down. Hopefully having a   bowel movement might help that too. They are planning on switching him back   to lasix from bumex tomorrow. They have finally put him back on captopril and   digoxin and of course they restarted his lovenox shots last night as well. He   will remain on an antibiotic until he gets the chest drainage tubes out   (these are what helps drain the excess blood from around lungs, heart, ect   after surgery) those should be coming out tomorrow. They pulled his arterial line   today so now he only has the one peripheral IV.

They   did have to give him another blood transfusion today because his hemoglobin   was lower than they liked. Getting that helped boost his sats and he is now   only on ¼ liter of oxygen and is still having an oxygen saturation of 79-83.   We could probably take him off oxygen but we are going to wait till after   they take his chest tubes out tomorrow-it his pretty uncomfortable and he   tends to get real upset when they pull them.

The   biggest news of today is Tristan is now on the recovery floor! This is the   fastest recovery we have had so far and hopefully he will continue to recover   phenomenally well!

He   has been such a trooper through all of this. I even got him to give me a   small smile once-but it took a lot of work on my part! I can’t wait till I   see his bright, happy smile again!

Thanks   again to each and every one of you for all of the support and prayers you   have shown. It is awe inspiring to see how many people are praying for my   little heart warrior! He has made it this far in part because of the strength   all of your prayers have helped give him! From the depths of my heart I thank   you all for that! This surgery was by far the hardest one for Sean and me to   deal with. It is easier to let them take your baby back when you can see how   much he is suffering but this time T looked, acted, and basically felt really   good. So it was super hard to let them take the chance on surgery and risk   taking all that away. It is a fear every time we allow them to take him back   to a surgery or a cath procedure but this time was the first time I just   cried and cried.

I   am still very fearful cause so much can still happen that would not be good   for Tristan but I am trying to stay positive and be grateful for all the   progress he has made in such a short time. He is an amazing fighter with   strength far greater than I could ever imagine a little baby having. He is   truly a warrior!

Until   tomorrow ♥Christy

11-19-2010 24+ hours post op

‎Friday, ‎November ‎19, ‎2010, ‏‎6:22:26 PM | smolby@gmail.com (Sean Molby)

Okay   so it has been a long night and a VERY eventful day. Sorry about the delay in   getting the post up last night I broke the computer and Sean was asleep so   had to wait until he woke up to fix it. Guess that is what happens on no   sleep-I break things LOLFirst   off T is doing amazingly well. He has been extubated and is breathing on his   own and has been since about 9 this morning. They have pulled out his central   IV (intentionally) 🙂 they didn’t want to risk a clot so since he is off ALL   of his IV meds they pulled it. He still has his Arterial line so they are   able to do blood draws and they placed a new AC peripheral line (that means   in his his arm) and it is working good. He managed to kick out the peripheral   lines in both his feet so that is why they had to put a new one in. They   pulled his foley (his urine cath) and he is peeing well on his own. His   sats are in the high 70’s low 80’s -that is as long as he is not mad!! and he   is on 2 iters of O2 right now. They are going to try to start feeding him by   tonight and they are also going to restart his Lovenox tonight as well. K   since I started typing they have now weaned him down to only 1 liter of   oxygen and still keeping is oxyen sats up at 76-79YIPEEEE!!!!!!! 🙂 This has   been the easiest recovery for Tristan by far!!! Hopefully he will keep it up!

Hematology   came over and talked with us, although they really didn’t have any answers.   They are goiug to do a genetic workup on Tristan to see if there is a genetic   reason he is having clotting issues. Once they do the tests it will take a   couple of weeks to get the results. Our nurse is drawing the blood for those   as I type.

We,   or rather T, is having some major issues with pain…and I can’t blame him!   Poor baby just went through heart surgery and all they have him on is   moriphine and tylenol-I would LOVE to know how many adults would be happy   with that situation. BUT their goal is to get him off the moriphine and only   have him on oxycodone and that, they are hoping, will happen by tonight.

With   some luck and continued progress from T we will hopefully be on the floor   tomorrow!

Thanks   again all for everything!! Will update again tomorrow night! ~Christy

11-18-2010 14 Hours Post Op

‎Friday, ‎November ‎19, ‎2010, ‏‎8:34:59 AM | smolby@gmail.com (Sean Molby)

IT   has been an exhausting day but T is doing a little better. His oxygen saturations   are mid 70’s and he is only on 50% oxygen. So considering just out of surgery   that is okay. He is starting to wake up a little bit more. They have him only   on moriphine for pain meds and it is PRN (with our approval-no repeats of   last time). They are still optimisticaly hoping for weaning him off the   ventalator tonight or early morning. He is breathing over the vent so this is   not such a long shot. His blood gasses have been pretty good and his blood   pressure is finally down to a appropriate level. His BP is still higher than   normal but within range. His heart rate and function have been good pretty   much all day. Overall we are happy with how his recovery is going. His nurses   have been awesome and we have felt very welcome and missed….(one of his old   nurses has called to check on him twice and she is on vacation in Arizona- so   that made us feel really good) and we have had tons of hospital staff stop in   to check on him. It is so amazing to see how many people even here have been   checking up and thinking of Tristan. T has so many wonderful people rooting   for him. Thank you all SOOOOOOOOOOOOOOOOOOOOOO much for your continued   prayers and support. We will do another update after rounds today.

11-18 surgery is over T is now in the PICU

‎Thursday, ‎November ‎18, ‎2010, ‏‎3:26:16 PM | smolby@gmail.com (Sean Molby)

Dr   O’Brien just left. He said T did great and everything looked good. His heart   was working exactly the way they want it too. The left PA is fixed and I   guess I misunderstood cause he said there is no way for them to know how the   clot developed BUT because it was a clot this means that T will have to stay   on those stupid Lovenox shots for longer than anticipated AND they may have   to put him on asprin as well…we will have to call hematology and have   another consult. For now they are getting T situated in the PICU and we   should be able to go and see him in about an hour. They are going to try to   extubate him later tonight not tomorrow so wish us luck with that! Thanks to   you all for your support and prayers-I can not say enough how much it   means..I will not update again til later tonight! LOVE U ALLA!!!~C

11-18 they are now closing T up

‎Thursday, ‎November ‎18, ‎2010, ‏‎2:04:05 PM | smolby@gmail.com (Sean Molby)

They   fixed his PA.. it was suprisingly a blood clot that was causing the blockage.   This is really shocking as T was put on Lovenox (a strong blood thinner) only   days after his 2nd surgery. So now we have to try and figure out what caused   him to clot like this and try to make sure it doesn’t happen again. Dr   O’Brien should be in to talk to us after he is done sewing T up. Tristan came   off bypass well. His heart is beating well on its own, we wont know about his   breathing until later tomorrow. I will still keep everyone posted as I learn   more myself… T is still NOT out of the woods. EVERY surgery for 24-48 hours   post op is extremely critical.

11-18-2010 3 hours into surgery

‎Thursday, ‎November ‎18, ‎2010, ‏‎1:23:04 PM | smolby@gmail.com (Sean Molby)

They   have now put T on bypass- they anticipate him being on for less than an hour.   they have not yet started the PA reconstruction but are in the process…T is   still doing okay- they have not seen his collateral lines yet but they will   be able to find out which veins/arteries/whatever he is using so they can   monitor and make sure they shrink back down. Either way he will have to have   a cath in the near future to check heart function…. keep praying. It is   really helping him! Thank yo so much everyone for all your support

11-18-2010 2 hours into surgery

‎Thursday, ‎November ‎18, ‎2010, ‏‎11:56:06 AM | smolby@gmail.com (Sean Molby)

They   got a central line in and they actually started the incision about 20 minutes   ago…Dr. O’Brien is through is sternum and is now just looking around and   checking to make sure everything is okay heart function wise..they should   start him on bypass within the next hour. And then slice open his left PA and   clear out the obstruction. Hopefully it will go smoothly and he will only be   on bypass a short while. Tristan is doing very well through all this so far.   They are happy with his vitals and how he is function at the moment… KEEP   PRAYING

11-18-2010 an hour into surgery

‎Thursday, ‎November ‎18, ‎2010, ‏‎10:47:56 AM | smolby@gmail.com (Sean Molby)

The   nurse just came back they got the peripheral lines in okay but they are   having a really difficult time with getting his central line again..they are   unable to go through his legs so they have to go through his neck or shoulder   area. This is dangerous because those are what are circulating his blood with   the Glenn shunt- if he gets a clot in them it is very, very bad and life   threatenig…kind of freaked out right now. The nurse will be back in an hour   with another update so I will just update here everytime I get an update from   her. PLEASE, PLEASE KEEP PRAYING!!!!!!!!

November 17….surgery tomorrow at 7:30AM 🙁

‎Thursday, ‎November ‎18, ‎2010, ‏‎12:52:38 AM | smolby@gmail.com (Sean Molby)

Sorry   for the delay in the update. I have just been enjoying my time with the kids   as we have not had as much going on the last two weeks-this is a long post so   be forewarned!!Tristan   is doing well; he is such an amazing little guy. Last update was through   Thursday, the 4th I think, so today we will begin from a couple of   Fridays ago. Nothing much happened on Friday the 5th except we got   ready for Briahnna’s slumber party. She invited a few friends from her new   school to sleep over on Saturday. It went really good. The girls all had a   blast. It was really nice to see Briah so happy. She has been through a lot   with all of this and she has been so amazing it was wonderful to be able to   do something for her. So we had a house full of pre-teen girls on Saturday   and Sunday morning…..somehow we managed and the house wasn’t burned down! J  
Monday we had physical therapy. Jaci was very happy with Tristan’s progress   and he did really good during his session. He did get a little fussy because   he got hungry but as soon as he got some food in his tummy he was back to his   happy, cooperative self. The rest of the day we just chilled out and relaxed.  

No   appointments on Tuesday but we had home health care nurse on Wednesday. She   was astonished at how good T looked. She said this was the best he has ever   looked and was curious if they were still going to do surgery. T’s new weight   is 18 pounds 9 ounces and he is just shy of 27 inches. His blood pressure is   still good and he sounded awesome. She was very happy with the visit and how   well Tristan seems to be doing!

Again   no appointments on Thursday but we made up for it Friday. T had occupational   therapy Friday morning. He did a little better this session, he managed to   stay awake through it at least J Nicole worked with him some more on taking a   bottle but Tristan is just still not interested. She did however figure out   that it is because he has forgotten what to do with a bottle. He does fine   until the milk gets in his mouth and then he freaks out because he can’t   remember how to suck, swallow, and then breathe. So, that is really frustrating,   especially since that was my fear from the beginning with not feeding him by   mouth for so long. I am actually pretty upset because when I voiced my   concern about him not remembering what to do, CMH OT assured me that wouldn’t   happen as long as I kept working with him with a pacifier. Ya, whatever! I am   really irritated right now with them and angry at myself for not talking to   Dr. Kaine sooner about feeding Tristan-even though I had no idea what it all   would mean for him at the time. I can not express how ticked off I am going   to be at CMH OT if he doesn’t get this skill back. K, sorry really frustrated   with them right no so I just needed to take a second to vent…

Anyways,   Nicole did what she could and had a pretty good session with T. After his OT   we had to go to our appointment with his pediatrician to get his RSV   shot-thank GOD we don’t have to pay out of pocket for those, they are   anywhere from $1800-$3600 per shot (it depends on where you get them) and   Tristan has to have one every month until RSV season is over-two this month   because it is too important for him to get and he needed it before surgery   and since it will be a bypass he will need it again after surgery too. And   poor thing because he is so big they had to do it in 2 shots so he had to get   stuck twice for the same shot and those needles are freaking long. Other than   the shot they didn’t do much. Said he looked good and told me they would call   to schedule his appointment for his shot next month!

We   got to go eat lunch with grandma and grandpa again on Friday after his   pediatric appointment. It was good and T wasn’t as fussy as I thought he   would be after getting his shot. Ella was even cooperative and not as   terrible two acting as she has been. Poor thing, I can hardly blame her, her   little world has been turned upside down, so considering, she is doing   amazingly well. I am thankful for the help my sister has given during all of   Tristan’s hospital stays by taking in Ella along with her four kids and so   far she is the only one aside Sean and mom that she will leave me for.   Without her there is no way I would be able to stay with Tristan like I need   to…so thank you sooooo much Tam!

Last   weekend wasn’t too eventful but we had lots of fun. Sean had to work on his   car some more so the kids and I went out to grandma and grandpas for the   evening on Saturday and to get us out of the house. We had a lot of fun. And   mom and Briah even talked me into playing Wii for the first time. It was a   lot more fun than I though it would be. I hadn’t laughed that much in a long   time- I even managed to beat several of the high scores…yep, I still got it-   ha ha! Dad spend most of his time holding Tristan and Ella- he is such an   amazing Papa and I am so glad the kids have him! Those are some of my best   memories of my childhood, are the times I got to spend with my grandma and   grandpa so it is really important to me that the kids have that. Briah   decided to spend the night but Ella and T came home with me.

Sunday   we went for a long walk through our neighborhood and to the park. By the time   we got there mom and dad had brought Briahnna home so they met us up   there…well hey met us on the way up there but then dad took Sean back to the   house to get the van while we continued walking so that we would be able to   play longer at the park. We all had a blast at the park. Tristan got to swing   in a baby swing for the first time and we got some really good pics of him.   Sean will post them later this week…. I think…. J in fact he got some really   unflattering pics of me and mom acting like children on all the play   equipment LOL but the kids REALLY enjoyed it all. It was wonderful to just   get out and be a family and to watch the kids have so much fun with grandma   and grandpa! It was especially fun watching grandma get on all the play equipment,   hee hee!!

Monday   the 15th was PT again, T only lasted about 30 minutes and then got   grumpy L I fed him a little and he calmed down but then went to sleep! We had   attempted to do a co-treat with PT and OT but as he fell asleep about 5   minutes after Nicole got here it didn’t quite work out the way we wanted. We   spent some of the time charting where is progress is so we know where we were   at when his PT starts back up after surgery.

Yesterday   was a slow day no appointments just me and the kiddos hanging out and   cuddling some more. Today we had pre-op. It is always a LOOOOONG day when it   is pre-op. We got up to the hospital at 10AM and they weighed (he is now 18   pounds 15 ounces), measured (same height), checked blood pressure, oxygen   saturation rate (T was at 85), and took all the other important vital info…we   then get to talk to a myriad of hospital staff: surgery nurses, cardiology,   anesthesia, and then do labs and get x-rays. They asked for T to be in   another clinical study, this would be his fourth! I also found out that he is   the 75th kid in the world to get a new type of tissue patch with   his Glenn…kind of an uneasy thought until she explained it all to me. I also   found out that we were misinformed and that another one of the first four   Hybrid kids IS still alive and doing well. It was a little heart angel after   T that unfortunately didn’t make it. That doesn’t really make me feel any   better but anyways… We finally got to leave today at 2:15PM. I did talk to   cardiology and before they cut into T they will do an internal echo, ( I   think they called it that) they will basically go down his throat and check   his PAs…somehow… and make sure there is still no way they can get a cath to   go through. IF they think that   there is now a large enough opening they will cancel surgery and retry a cath   but they said that was really unlikely and even though T is doing really,   really good right now it is possible for his collateral lines to be supplying   enough blood to his lungs to enable him to function normally (well as normal   as a hypoplastic kiddo can anyway).

Today’s   appointment was actually quite educational for me. I also found out that   aside from being the 4th baby to go through the Hybrid at CMH he   is only the 120th in the nation to have it done and it has been   shown to be a safer way for the more critical HLHS babies to make it through.   Usually they do the Hybrids on premature babies. T was actually rather old to   have undergone it but since he wasn’t pre-diagnosed in utero as most babies   are and the delivering hospital didn’t catch his condition either despite all   his signs (both being long stories) anyways because of all he had to go   through he was too critical to go the traditional route; it is kind of scary   to know that it is such a new way to do things… but I also found out that the   obstructed PA is something that is associated with the Hybrid as it has   become fairly common for the Hybrid babies to have to have their PA reopened   after the second stage, just wish we could have been a little bit more   pre-warned as we just are really not ready for this surgery.

I   think the hardest part is how good T looks at the moment. This will be the   first surgery that he will have to have that I can’t just look at him and see   how much surgery will help him…it may sound stupid but it is a little easier   to let them take him back if I can see how much he needs the help. Anyways it   has been a real struggle the last couple of weeks. I just feel very   overwhelmed and extremely scared! I can not begin to even express how scared   I am…I am really, really, really, really, really, really, really, really… I   think you all get the pic… ready for this one. I told Sean I am not sure if I   can let them take him back this time……I just can’t lose him

T   is finally completely weaned off his sedation meds. Just in time for surgery!   He hasn’t even been as fussy as I had figured he would be. He is actually in   good spirits and smiling as often as he used too! His naps are a little more   regular and I think he even is sleeping better than he was on the meds. Go   figure!

My   house is a complete disaster but it was a sacrifice I decided to make this   week in order to spend as much time as possible with Ella and T! I did what I   could during afternoon nap but otherwise I said screw it. J I don’t want to   look back and say I wish I would have held him more or why couldn’t I have   just let the laundry go for another day. My kids right now are more important   and the time I can spend with them invaluable! Besides I cleaned it really   good before last surgery, was gone for a month, and came back to a pig sty   LOL! Anyways I have to go into each surgery hoping for the best but still   preparing for the worst. L

It   is not something I like to think about but I do have to face the daily   realization that tomorrow may be a day that T isn’t with us any longer. I   hate that the thought of death is a constant companion in my head but I know   too many heart moms and heart angels to not accept it as a possibility. It is   scary and oftentimes overwhelming! I hate that my family is going through   this. I hate that my son has to be in so much pain and go through so many   terrible things. I hate that Briah has to worry about her little brother. I   hate that Briah and Ella have to be away from us for so long when T is in the   hospital. I hate CHD!!! It is   not fair that anyone should have to go through this. But I am thankful for   EVERY SECOND I get with my son. I am thankful for every smile, every cry, and   every hardship. Because I know as much as they suck they are still a blessing   because I could not have him and that thought is worse than anything I have   to go through. That is a pain I don’t want to have to experience; in truth I   am not sure I am strong enough to handle it if anything were to happen to T.   So I just have to keep trying and working. I have to keep reminding him how   much we love and need him and hope that God will keep giving us time with   him. Surgery is tomorrow. I am NOT ready for this again but we don’t really   have much of a choice. Hopefully T has had enough recovery time! Please keep   him in your prayers as we still are in need of lots of them. I will try and   do daily updates as we are in the hospital.

Thanks   again for all the support everyone. I love you all.

Huge   heart hugs and thanks from me and my family!

♥Christy  

November 7….surgery in 11 days

‎Sunday, ‎November ‎07, ‎2010, ‏‎2:45:09 PM | smolby@gmail.com (Sean Molby)

Another   super busy week last week. Already   told you about last Monday, PT went good. He has his next visit tomorrow so   you all will find out about it this weekend. On top of his scheduled in house   PT sessions I also work with him daily at least twice a day for about 30   minutes to an hour each. I think he is making some good strides but it is   definitely a lot of work but TOTALLY worth it! He is really close to sitting   up on his own I think! He still won’t put any weight on his legs   independently but hey one step at a time.
Tuesday he had his cardiology appointment. No miraculous recovery L His   bypass surgery is still on for November 18th. Dr. Kaine was happy   with what he saw and was really excited to see him off oxygen. He okayed   Tristan taking baby food as T is willing and as long as OT deems it safe. So   kind of excited about that cause I will at least get to feed him something   even if he still won’t take a bottle. So far he has had peas which he deems   edible J, sweet potatoes which he LOVES. He is not such a fan of squash,   carrots, green beans, or spinach/carrots but so far I have not found a fruit   he won’t eat he has tried pears, bananas/mixed berries, apples/prunes, and   just plain bananas. He also likes his teething biscuits but unless I hold it   for him he forgets it is in his hands! LOL

We   got to go eat lunch with grandma and grandpa Tuesday too. It was their   anniversary so it was nice to get to celebrate with them. Of course dad held   Tristan like the entire time J I also let him show him off at his work, as   long as he promised that he would not let anyone hold T or do a lot of   touching. T LOVED all the attention and I think all of dad’s coworkers fell   in love with T themselves!! It was nice to get out and feel a little normal   for once.

Wednesday   was his home health care nurse visit. Tristan now weighs 18 pounds 5 ounces   so he is gaining about 20 grams a day which is right where they want him at!   His blood pressure is still good in fact it is now in the upper 80’s/40’s so   even better than the week before. Ellen got to watch him eat a little baby   food too and she was really excited to see how well he was doing with it!   Over all she was happy with what she saw and how Tristan is doing. We talked   a little about me asking the doctors to keep home health for at least once a   month after this surgery until his stage 3. It is uncommon for CMH to do this   but I have found through other heart mom friends and my own research that   other hospitals consider it routine to continue home visits until the third   stage surgery, so wish us luck on that proposal! I find it very important   because a lot of the fatalities with these kids are in-between surgeries   while they are at home so I find it vital that we keep constant care and   observation available for T until he makes it to his 3rd stage   especially considering how fragile he is and his history!

Thursday   was OT and it would have gone great had T managed to stay awake!!   Unfortunately he conked out after about 20 minutes so we didn’t get to do too   much work but he did fairly good with what she did work on! He still won’t   take a bottle but he is doing a little better with a pacifier; he will take   one now as long as you hold it in his mouth. He will only hold it in himself   for a few seconds but progress is progress and that is better than even a few   days ago!

T   is close to being completely weaned off his sedation meds. He should be   completely off in a little over a week. He is still a little fussier than   normal but we are going a little faster with weaning than we were. I really   want him to be off before surgery. He does okay; he just always wants someone   holding him. Which let me tell you is really not such a hardship J makes   keeping the house super clean not very possible but I have decide that is a   sacrifice I am willing to make. I don’t want to look back and say “I wish I   had held him more and just said screw the house work” if anything happens I   want to be able to look back and say “At least I spent as much time with him   that I could have”

It   is not something I like to think about but I do have to face the daily   realization that tomorrow may be a day that T isn’t with us any longer. I   hate that the thought of death is a constant companion in my head but I know   too many heart moms and heart angels to not accept it as a possibility. It is   scary and oftentimes overwhelming! I hate that my family is going through   this. I hate that my son has to be in so much pain and go through so many   terrible things. I hate that Briah has to worry about her little brother. I   hate that Briah and Ella have to be away from us for so long when T is in the   hospital. I hate CHD!!! It is   not fair that anyone should have to go through this. But I am thankful for   EVERY SECOND I get with my son. I am thankful for every smile, every cry, and   every hardship. Because I know as much as they suck they are still a blessing   because I could not have him and that thought is worse than anything I have   to go through. That is a pain I don’t want to have to experience; in truth I   am not sure I am strong enough to handle it if anything were to happen to T.   So I just have to keep trying and working. I have to keep reminding him how   much we love and need him and hope that God will keep giving us time with him.   Surgery is less than 2 weeks away. I don’t think I am ready for this again   but we don’t really have much of a choice. Hopefully T has had enough   recovery time! Please keep him in your prayers as we still are in need of   lots of them. Thanks again for all the support everyone. I love you all huge   heart hugs and thanks from me and my family!

♥Christy  

November 1—hope everyone had a fun Halloween!

‎Monday, ‎November ‎01, ‎2010, ‏‎11:41:21 PM | smolby@gmail.com (Sean Molby)

Well   as I mentioned last post last week was super busy and eventful! Sorry I   didn’t get this in Friday like I said but I spent the time with the kids and   decided I would wait till after Halloween for the update!We   started off Monday with physical therapy. Jackie, his therapist is AWESOME!!   She does such a great job with Tristan. T did really good thru last week’s   session and every time she leaves I see more progress with him! We then   proceeded after PT and headed to CMH for T’s hearing and special care clinic.   He passed his hearing test which took forever cause he is so not interested   in their testing LOL! Special care clinic started out good and then T conked   out after about 30 minutes and so we had to stop but we talked and discussed   plans for him and expectations. She was happy with where Tristan is at the   moment, as far as she could see after a half hour evaluation. We have another   appointment with her around Tristan’s 1st birthday.Tuesday,   Ellen, T’s home nurse came. Tristan is now 18 pounds and 1 ounce, well he was   Tuesday anyway-now he prob weighs more J His blood pressure was finally back   down in the 90’s not that it was super high but it had been in the low 100’s.   She said he looked great and his lungs sounded good. Unfortunately Tuesday is   also the day that T started getting congested (still just in his nose) again.   He has been coughing a lot and we have had to start suctioning his nose out   again L but he is such a trooper and is handling it with stride!

Tuesday   night grandma and grandpa came over for dinner since my mom was leaving to go   out of town for a week. She wanted to be able to see T and the girls before   she left. We had a great dinner and a wonderful visit and it was nice to   spend time with them outside of the hospital and with T doing good for a   change!

Wednesday   we had our hematology appointment. Now that was interesting! T was supposed   to do a well visit with them and then get his Lovenox levels checked, which   requires a blood draw. I was told they would already have vascular access   scheduled and waiting to draw the blood since it is so hard to get blood from   T. However, I guess no one checks the schedule cause by the time they called   us back to the appointment room, took vitals, weighed, and measured T we had   less than 25 minutes to get his blood drawn. (A Lovenox level is a timed   blood draw-it HAS to be drawn within 4 hours of his last dose) Anyway, I   reminded them they needed to get a level and they took us to a room and then   two nurses came in to start to draw the blood. I told them that they were   welcome to try once but that they should go ahead and call vascular cause   they only had 20 minutes before it would be too late to draw and he was a   hard stick. They started to argue with me by saying that they had to try before calling vascular. I just   laughed at them and said you obviously don’t know who my son is, T is an   exception you can look it up- he has 24 hour vascular/transport/anesthesia   access. I had to explain yet again how difficult it is to get lines and blood   from him. It is so wonderful how well all the departments in the hospital   communicate!…. NOT!! However, vascular did make it over and we DID get his   blood with only 2 minutes to spare. Whew, I was sweating that one cause I was   gonna have to bring him back up if they missed the time slot! Got the results   back and his levels are still therapeutic so no changes with his shots! We   have our next appointment with them Dec 6, they will check the clot in his   leg and we should be able to stop his shots then as well!

Wednesday   was also the awesome, wonderful day that we found out T was okay off extra   Oxygen, it was an accident actually. His O2 tanks are suppose to last a   specific amount of time based on how high of an output you use but sometimes   the tanks are short and they run out faster than they are suppose to. I   always try to check and watch but I missed it on Wednesday and his tank ran   out. I am not for sure how long he was off but anytime that happens we always   wait and see how long T does okay without. This was the first day he was able   to stay off and keep his saturation levels up! So far he is still off and   doing good, great actually he is still in the high 70s low 80s! So one less   tube we have to attach to him. Which was helpful Thursday night cause we had   parent/teacher conferences for Briah. Those were good she has straight A’s,   well almost she still has some homework to make up from being sick but once   those are turned in she will have all A’s. We are super proud of her. Her   teachers are amazing and we were really impressed with how happy they were   and all the great things they had to say about Briahnna! One of them even   said that Briah is the type of student that makes them want to go to school   and teach, that made us feel really good cause we feel so bad with all the   ups and downs that all the kids have had to go through with T’s heart   condition.

Thursday   we had OT and Nicole, his occupational therapist, had a blast trying out lots   of new tastes to try and get Tristan interested in food again. T just loves   her and she is amazing with him! We tried cocktail sauce, salsa, steak sauce,   honey mustard, squash, and bananas. There may have been a few other tastes in   there but I can’t remember them. T did okay. He liked cocktail sauce A LOT   until the after taste came in then it ticked him off. The salsa and steak   sauce were no goes but he loved the honey mustard. He did good with the baby   squash and bananas too. I kept trying those through Saturday and each day he   tolerated it more and more. He is doing a little better with his pacifier and   is starting to suck on it for longer periods but he is back to wanting them   cold and with sweeties but hey whatever it takes! Still no interest in his   bottle but we keep trying several times a day. He IS starting to chew on it   to get the milk out but sucking is still not his priority! On Saturday we switched   to peas and pears and he seems to like them both fairly well but he won’t eat   them cold or really warm he has to have them just the perfect temperature… so   I am thinking I won’t be reading him Goldie Locks and the Three Bears cause   he obviously does not need any help with the lesson of learning that certain   things have to be “just right” LOL

Friday   we finally got to chill out and just rest and get ready for the weekend. So   we just hung out at home and relaxed and cuddled. It was nice to have a break   for at least a day! J

Saturday   was a little more of nothing for me and the kids, but Sean went down to   Lawrence to help with the benefit garage sale for Tristan. Again, thank you   so much to Francine and for all of you who donated-we were able to get groceries   this week with the money! Sad but true, it has been really hard since I had   to quit work. I can not begin to express how much we have appreciated the   support we have been shown and given. I guess there is still quite a bit of   stuff left over so I believe Francine said she was going to do another sale   next month. Anyways, Saturday ended with the girls carving their pumpkins and   we did some last minute costume checks. Briah was a gypsy, Ella a Tinkerbelle   princess (she decided that she wanted pink and purple in her outfit and I   guess it is logical to think that if Tink became a princess she would get to   add more color to her outfit. LOL) and T was a monkey, I will have Sean add   the Halloween pics sometime this week if he gets the chance!

Sunday   was stressful, it started off good but I had someone call and want to buy   Ella’s old 18 month and 2T clothes; my add was fairly straight forward about   the clothes being sold as a lot and I didn’t think anything of it as the lady   looked through them. I do the same to make sure that everything is in good   condition. After 1 ½ hours, yes that long, she said she only wanted like 20   things (each lot has over 150 pieces of clothes- 2 lots total) I was pretty   ticked off but wasn’t about to have wasted the last 2 hours so I just sold em   to her but because they came in the middle of preparing to get ready for   trick or treating we didn’t end up getting everyone ready until after 7:30.   By then it was way too cold to take Tristan out and Ella only lasted 4   houses. The kids still had fun but I felt really bad that so much time was   wasted on the lady who came to look at the clothes. That will teach me   though, next time I will just say I am busy…which is what I was gonna say   but I didn’t think they would be here ALL night… oh well lesson learned!

Today   we had PT again and Jackie was impressed with T and said she could tell a   difference even from last week. Which made me feel good that all the time I   spend working with T is doing as much good as I hoped! Tomorrow we have   cardiology, Wednesday home health, and Thursday is OT and then we may have to   squeeze in immunizations- we still are not sure if we it can get them cause   in order for him to get them before his next surgery they HAVE to be given on   Thursday and technically it won’t be 30 days since he got his last set until   Saturday so they are trying to figure out if it is better for him to get them   or if he has to wait! So another busy week and then only 18 more days till   surgery… I am sooooo NOT ready for this again. Maybe we will go in tomorrow   and they will do an echo and discover that T has miraculously healed himself,   at least with his blocked pulmonary artery anyways…hey, it may sound   ridiculous but I am actually really hoping that is what they say. I can   always hope! He has overcome more difficult obstacles than this by miracles   alone so why not another one! J

(Deep   breath) but for now I will keep praying and doing all that we are. I am so   proud of my little man. He is so strong and amazing. And despite all that he   has been through he is such a happy boy. We have been beyond blessed with him   and the girls.

Thanks   again for all the thoughts, prayers, and support! I will update again on   Friday and let you all know how his appointments went this week! ♥Christy

October 24

‎Sunday, ‎October ‎24, ‎2010, ‏‎8:26:57 PM | smolby@gmail.com (Sean Molby)

Pretty   uneventful weekend, didn’t do much except for hang out at home with the kids.Tristan   is off his continuous feeds and on feeds every three hours now, moving to   every 3 ½ hours tomorrow and then we will VERY GRADUALLY start to stretch it   out again. We still are not sure what was causing the vomiting, he was still   doing it on the continuous feeds just not as severe but being on them has   seemed to help him with digesting his food better. It may have just been a   combination of everything: too much food at once, withdrawal, and the stomach   bug. The fact is now he is doing better and that is what counts.He   has LOTS of appointments this week. Physical therapy tomorrow morning   followed by a hearing appointment at noon and a special care clinic   appointment at 2. He has his home nurse come Tuesday morning and then a   hematology appointment at noon on Wednesday and then his occupational   therapist on Thursday. We also have to go to his cardiologist next week but   he is squeezing him in so we don’t have the day and time yet.

They   presented him again on Friday at the cardiologist conference. No one had any   new info or ideas but they all agree another by-pass surgery is needed to   clear whatever obstruction is in his left pulmonary artery. I don’t remember   if I mentioned last post or not but they now believe that the obstruction is   from scar tissue (more so than a clot or stenosis) and because of that, if it   is scare tissue, they will have to do several interventional caths throughout   Tristan’s life (unknown how many or for how long) to keep the left PA open.   We will just have to see what happens at his next surgery-something I am not   particularly looking forward too,

The   kids are almost ready for Halloween. Briahnna is going to be a gypsy, Ella   chose to be Tinkerbell, and T is going to be a monkey! It will be nice to   have all the kids together to go trick-or-treating, especially since T will   most likely still be in the hospital for Thanksgiving-we still are not sure   how long the recovery time for this next surgery will be. The traditional   Glen, which is also an open heart by-pass, has an average recovery of 7-10   days so I am not sure if this one will be like that or not.

Not   much more to report. Still trying to get the house organized and clean- a   never ending task. We still have tons of boxes to unpack. I am not sure it   will ever get done LOL, every time we think we are close to being done 5 more   boxes seem to appear out of no where. One day at a time. Oh T is getting his   first tooth and he does not like it one bit. He has been put through hell and   tolerated it like a champ but boy is he cranky with getting his first tooth!   J

Thanks   again for all the thoughts, prayers, and support! I will update again on   Friday and let you all know how his appointments went this week!

♥Christy  

10~20~2010; surgery date is set

‎Wednesday, ‎October ‎20, ‎2010, ‏‎8:23:53 PM | smolby@gmail.com (Sean Molby)

Well   the surgery date has been set. It is farther away than originally planned but   there are several reasons for that.The   first being they are extremely happy with where Tristan is right now- meaning   his O2 saturation levels with only ¾ liters oxygen is optimal and shows that   his collateral veins are sufficient enough to handle delivering blood to his   left lung in lieu of his left
PA for the time being. Another reason they are waiting is because right now   he is only 8 weeks post Glenwood (2nd surgery) and being that he   is doing so well they are balancing the risk vs. benefit factor and there is   a definite better benefit to waiting versus doing another surgery right now.   The last reason is that both of his cardiac surgeon AND his cardiologist will   be out of the country for a week for non-profit work- and neither one felt   comfortable scheduling and doing a surgery and then leaving not knowing the   outcome, especially since Tristan likes to keep things interesting.
So   the surgery date is Thursday, November 18- the actual time is still not set.   The really good news about this is that Dr. Kaine, his cardiologist, will be   on service at that time so there will hopefully be no mix ups or miss   communications and he will be constantly monitoring Tristan personally, which   makes me feel better.

I   have had a few people ask if I feel better now that we have a set date. The   answer to that is this; At no point am I going to feel okay at handing my son   over to a handful of surgeons to do yet another bypass surgery, I just have   to accept it and be thankful that he is doing well enough for them to   postpone it a little longer so that he has even more time to heal from his   last surgery. At no time am I going to be prepared or ready to sit and wait   again for hours wondering how he is doing and if he will be okay. Again all I   can do is accept and be thankful that he has shown such amazing strength and   determination. My baby boy is barely over 6 months old and has already survived   so much: a often times fatal congenital heart defect-that is considered one   of the most complex CHDs out there, his heart stopping at 3 days old and his   valve closing, coming back from the brink of death-when not even the doctors   thought he was going to make it-, surviving through his first surgery, NEC, 1   exploratory cath, 2 interventional caths, one open heart by-pass-that is even   more dangerous than most kids with his condition go through, and finally to   not only survive but overcome what most kids post Glen end up dying from, a   closed pulmonary artery-yes this is a common complication with these kiddos,   T just has it for a different reason than most but still he has managed to do   the near impossible and compensate to accomplish pumping blood to his lung   even with his PA closed”.

My   son is the definition of miracle and strength. I don’t know where he gets it   and it amazes me to watch as he defies odds over and over. I have to believe   he is meant to stay here with us and that he will continue to fight. As I sit   here typing this I have Tristan in my arms and I am beyond grateful for that   gift, please don’t forget that…our   kids, our loved ones, are gifts. Gifts that we often take for granted. Go to   your loved ones tonight and tell them- REALLY TELL them how much you love   them. Hug them, REALLY HUG them and let them know how much they mean to you.   Because the reality is you may not get that chance tomorrow. My tomorrow may   be taken away from a heart condition, that is a fact I have to live with   EVERYDAY, but any tomorrow for anyone could be taken without warning without   that preparation. I don’t want to lose my son, losing him would devastate me   beyond explanation but if, God forbid, something happens I will have some   comfort knowing that he knows how much he was loved and wanted. Even at 6   months old he knows- can you say the same! Please take time for the ones you   love! ♥Christy ~As always please keep Tristan in your prayers

10~19~2010

‎Tuesday, ‎October ‎19, ‎2010, ‏‎6:05:41 PM | smolby@gmail.com (Sean Molby)

Ok,   so I didn’t get this in yesterday like I said but to be fair…I AM REALLY   BUSY! JThe   past week and a half has been interesting to say the least. Like I mentioned   last post we ALL ended up sick last week and that was a challenge all in its   own. For now we are all on the mend. I am still trying to get caught up on   sleep as between Ella and Tristan I only managed to get about 3-4 hours total   per day for the last week.We   have been trying to lower the amount of times T gets fed during the day and   so far it hasn’t been working out so well. We are not sure if he is having a   problem with the volume or if he is having withdrawal issues still. Very   frustrating not knowing! To try and figure out which it is they have now   ordered him to be on continuous feeds all day long. Not much fun for T as it   limits how much activity we can do with him as he tends to spit up with a   full stomach-not as much as when he vomits for what ever reason, just normal   baby spit up amount whenever he does anything with activity. It makes me feel   bad; I wish he could just enjoy being a baby for once! He has already been   through so much L but he is still a trooper and is generally in good spirits;   smiling and laughing and (baby) talking all the time! He has still vomited   with the continuous feeds but I am supposed to give it 2-3 days and he still   has a day left.

Tristan   has discovered something absolutely amazing in T-land LOL he has now   discovered his hands- a little later than most kiddos but he finds them   completely fascinating and stares at them for hours on end…it is the cutest   thing! He is starting to keep his hands open most of the time instead of   fisting them up, I am hoping he won’t revert back to fisting while he is in   the hospital this time. He is doing a little better and moving his legs but   still keeps still most of the time.

He   had is home nurse visit yesterday. He is now 17 pounds 7.5 ounces and is 26.5   inches long. He is growing so well and is right on target for his age still   being about 50% in the national average for both weight and height! She was   happy with the way he looked. Said everything looked good-color, profusion,   capillary refills, blood pressure, soft tummy, ect. She had no immediate   concerns, which was good to hear.

He   had his first home PT-post surgery today (we had to cancel ALL of our   appointments last week with everyone being sick), it went pretty good. She   was very pleased with his development especially considering that he has only   spent 2 ½ months of his 6 ½ month life out of the hospital. She was impressed   with his head control and his tolerance with being worked with. She is   anxious to really get going and for him to start getting stronger- (Aren’t we   all!!!)

His   next OT session is tomorrow and boy does Nicole have her work cut out for   her. J T is still refusing to let anything in his mouth aside from his own   hands. Although I have caught him off guard a couple of times when he was   dozing off to sleep, if I can time it right he will suck on his pacifier for   a few minutes then! So I try real hard to catch him at those times-he still   however will not hold it on his own in his mouth like he used to. They did a   real number on him at the hospital this last visit-being intubated over and   over really took a toll on him! L We will have to see what kind of magic his   OT is capable of!

No   news on surgery yet. I spoke with his cardiology nurse practitioner for about   an hour and a half yesterday but still no idea when surgery will be. I   requested a meeting with his surgeons so that we can get some more info but I   have yet to be contacted. The original plan was for this new surgery to be on   the 25th of October but being that is less than 6 days away now I   am kinda hoping not! –For those that missed the last update on this, Tristan   has to have another open heart by-pass surgery so they can go in and remove   whatever is obstructing his left pulmonary artery (it is completely blocked   but luckily he has formed collateral veins to supply blood to his left lung,   without those he most likely would have died) We are supremely nervous and   worried about this upcoming surgery mainly because we don’t have any info on   it and it has only been 8 weeks since his last open heart by-pass. We are   scared and stressed and trying really hard not to show the kids. Don’t know   if that is working. I am not looking forward to sending the girls away to   relatives for an unknown period of time, AGAIN nor am I ready to let them   take my baby boy back to do yet another extremely invasive surgery. I just   pray and hope that he remains as strong as he always has and that he will   pull through this with as much ease as his first surgery!

As   soon as I get some more info I will do another update, if only a brief one.   Thanks again to EVERYONE for all of the love, support and prayers!

-oh   on a side note I have had several ask where to take their donations for   Tristan’s fundraiser garage sale- Francine is having the sale on October 30th   the sale will be in Lawrence at 807 E. 23rd St. #K, Lawrence, KS 66046 (The   Midwest Diversified Building-you can google for directions) you can drop off   donations to her there or if you live in Missouri, I guess you can bring them   to my house-just email me or facebook for my address. Thanks again to all who   donated- we REALLY appreciate it! ♥Christy

Oct 18…really really early on Oct 18 (LOL)

‎Monday, ‎October ‎18, ‎2010, ‏‎3:35:13 AM | smolby@gmail.com (Sean Molby)

Well   it has been an eventful week, mostly because my entire house got sick. Not   just little sniffle sick full out in the bathroom all day really bad stomach   bug sick. Poor Ella got it the worst but I do have to say luckily Tristan got   the weakest strain of this bug. He had vomitting and diareah but barely for a   day, so we lucked out there but like I said poor Ella was super sick for   almost the whole week 🙁 poor little thing. I was out for about 3 days and   Sean and Briah both had about two days worth. Let us just say the last week   here…not so fun!Amyways   that is why I have not done an update lately so I am sorry for those that   rely on this for new news. However, I am headed for bed..finally, it is only   3AM. I do promise however to put up a good fully updated post sometime before   tomorrow evening.We   still dont have the next surgery date yet we just know it will be within the   next two weeks and as far as we know it will be another open heart bypass 🙁   of which I am so not ready for. I will hopefully have more info tomorrow when   I call to talk to the docs. Until tomorrow~hope everyone is getting a better   nights sleep than me lol! luv ya all~Christy

Monday, Oct 11

‎Monday, ‎October ‎11, ‎2010, ‏‎12:48:02 PM | smolby@gmail.com (Sean Molby)

T   is doing good since being home… Rough weekend for me though, I got SUPER   sick, thank goodness Sean was there to help out or I would have been in a   world of trouble!Tristan   is now eating only every 4 hours, lengthened from every 3 and doing GREAT   with it. He has not spit up or thrown up since before his cath. AND he sounds   so much better! His voice is almost completely back to normal; in fact he   talks ALL the time now, I think he missed having the ability to make noise!!   J He is still on a continuous feed overnight but I am going to work on   weaning him from that as well. Trying to get him on a schedule that would be   similar to that of a normal 6 month old but we still have a lot of work ahead   of us.He   is doing awesome at sitting up by himself- he can hold himself independently   for several seconds, which we are extremely happy with considering what he   has been through. Still working on getting him to keep his head up-he likes   to just let it hang; he must see something more interesting on the floor than   I do LOL!! He is doing great in his Bumbo and loves to sit in it like a big   boy!! He is rolling better and better but still won’t do it unless you prompt   him, I have yet to find anything that he finds worth starting to roll for!

He   is getting his first tooth!! Hopefully we can start putting food in his mouth   to help him learn what to do with it! J

We   have a semi relaxing week. Home nurse and OT Wednesday, not sure when PT will   be, then we have his GI surgery consult (for his G-tube) on Thursday. Even   though that surgery is postponed until after his next open heart by-pass they   wanted me to keep it and go ahead and set the surgery date up for the   beginning of December! It is more than I wanted T to have to go through but   as long as he is alive and doing well I will take it.

Thanks   again all for your support. I am sorry to say we will definitely be needing   more than ever in a couple of weeks! Big hugs and kisses to you all ♥Christy

Untitled Post

‎Friday, ‎October ‎08, ‎2010, ‏‎1:47:25 PM | smolby@gmail.com (Sean Molby)

♥♦♥♦♥ HAPPY 6 month Birthday   TRISTAN DRAKE!! ♥♦♥♦♥WE LOVE YOU BABY BOYWell,   quite an eventful couple of days we have had. Tristan’s cath did not go as   well as hoped. Again it took them over two hours to get a central line going,   which they have to have   to do the cath procedure, but they did eventually get one only to find that   they were not able to do any interventional methods to reopen his left   pulmonary artery. After a four hour procedure they discovered that his left   PA is completely obstructed with no way to interventionally correct it.   CRAP!!

Back to   the PICU we went, scared and worried about what was going on. There was much   debate on whether to do a CAT scan or an MRI but do to scheduling the CAT   scan is the route they went. Luckily they were able to get great images and   know at least where the problem is located if not what is actually causing   it. We didn’t get the preliminary results until later last night and we just   now got the final.

The docs   finally came in to let us know that they think that his left PA has either stenosis from his aortic   valve (I think that is what they said) compressing it-however the surgeon   suggested this is highly unlikely as there was a significant space between   the two to prevent that from happening- or T has somehow developed a clot   that has completely obstructed his blood flow through the PA-this is what   they are leaning toward as it is the most logical. There may be some other   scenarios out there but they have not disclosed/discussed them. These are the   main two possibilities they are considering.

We asked   why he has shown no signs of this and it turns out that T has compensated his   lack of blood flow through his left PA by enlarging collateral veins that   also go to his lungs and so he is actually getting blood to his left lung but   not in the way it should be getting it and there is no way of knowing how   long these collateral veins will last as they are doing work they are not   meant to be doing. We now have more new signs and symptoms to look for and be   cautious of to make sure that things are still going okay until next surgery

With   this new info they now have to do another surgery. L It will be another open   heart by-pass as they will have to go in and cut open his left PA so that   they can remove any clot or stent it open if it is stenosis. We will have to   wait another 2 weeks as it is not safe to do another by-pass this soon after   his last one. L

Of   course, his G-tube will now be postponed for at least 2 more months but they   are going to let us go home until the next surgery. Since he has done so well   at home since being discharged from last surgery they are confident that it   is the best place for him right now. Thank goodness! So we are now waiting   for a lovenox level and then they are also going to do his immunizations here   as they need him to have them at least 2 weeks before this next surgery.

We are   scared and freaked out right now. This is not the outcome we were expecting   but we have to be thankful that his body is compensating by providing blood   to his left lung through collateral veins. If he wasn’t, things would be MUCH   worse and even more critical than they already are. We did get the disturbing   news that T is now the last surviving Hybrid HLHS of the first four. I knew   about the first two, as I am friends with their mamas but knowing this is   VERY frightening. Another bypass was not in the picture this soon. I wish   there were some magical way to fix my baby boy. He has been through so much.   Too much! It makes me sad and frustrated that I can’t make this better. I   feel so helpless. I hate that…I HATE THIS! I am sorry but I am in my angry   phase right now. I don’t understand why babies have to suffer. I don’t   understand why so many of my new friends have to go through this too, why so   many have to go through even much worse things. It is just not fair.

I am   trying to be strong and positive, especially for T and my other kids but it   is soooo hard when all I want to do is scream and beat out my frustrations   out! I just want T to get better so that we can go home and not have him have   to go through all of this. He is such a trooper and such a fighter and he has   more strength than I can imagine!

Thank   you everyone for all your support and prayers. I know I have said it before   and this won’t be the last time I say it but I can not begin to express how   much it means to us.

And   while I am thinking of it I do want to say thank you to all of our neighbors,   I am so terribly sorry I am just now getting to this but thank you all for   the food you all chipped in on for us after we got home from last hospital   visit….it was much appreciated and greatly needed as cooking was not on my   priority list. The food was wonderful thank you all!

Hug your   loved ones tight today-and everyday! Time goes by faster than we realize! Let   your kids know how much they mean to you! I hope everyone has a great weekend   ♥ Christy

Wed. Oct 6th- day before interventional cath

‎Wednesday, ‎October ‎06, ‎2010, ‏‎11:08:09 PM | smolby@gmail.com (Sean Molby)

♥♦♥♦♥   HAPPY 6 months in 2 days TRISTAN DRAKE!! ♥♦♥♦♥

Ok,   so I have tried to start this…or rather finish it, several times but between   T, Ella, and Briahnna I keep getting pulled away. T is at the moment taking a   short nap, Ella is watching Dinosaur Train, her favorite show and Briah is at   school so I think I may get to post it this time.

We   have been pretty busy the past week. T had his GI follow up visit last   Thursday. That was an interesting experience! The appointment went good but   getting there would have been cause for a whole comedy show!!! I can only   imagine how I looked by the time we made it to his appointment.

To   explain, just try to imagine me, by myself, getting Tristan and Ella plus 2   small O2 tanks (each 1 ¾ ft in height), an oximeter (6x8x3 in), a suction   machine (10x10x8 in), the diaper bag-packed full of diapers for both kids,   wipes, two changes of clothes for T, and all his supplies for feedings plus   his medications (8 of em)-, his feeding monitor (6x4x1.5 in) plus 500 mL   feeding bag, and a huge double stroller….it took me 30 minutes, literally,   just to get everyone and everything out of the van and organized before we   could even head up to our appointment!

By   the time I made it up there I felt like I had run a marathon!! The doctor,   however, was very happy with Tristan’s progress and development. She upped   the dose of his Zantac in hopes that it may help with his vomiting or at   least reduce the acid, and therefore, the damage it can cause when he does.   We discussed in length him going back on breast milk and we agreed that we   probably should wait until the end of this month after his G-tube surgery,   just to be on the safe side. She wants to give him the best possible chance   to succeed. She is optimistic that he will do fine. Especially since most   babies outgrow a milk allergy by 6 months and he will be 6 months on Friday.   So, waiting until the end of the month will give him a little more time. The   other reason is because she said that some kids have a difficult time after   the G-tube surgery with getting their bowels to move appropriately for a   while, so he will go back on Elecare right after surgery for about 2-3 weeks   and there is no since in switching him back and forth and back and forth.

He   had his first home OT visit, post op, on Friday. It went really good. T is   progressing faster than expected after being in the hospital for a month. He   is still behind a little but he is quickly getting back to where he was at,   developmentally, before surgery, aside from still having an oral aversion; L   he still won’t take his pacifier very well but he is getting better at   allowing us to use different types of oral stimulation therapy and as long as   there is sweeties or just plain water he will suck on our fingers. So his OT   suggested we start introducing different liquid flavors to help get him   interested in sucking and wanting things in his mouth again. Our main goal   right now though is getting his head, neck, shoulder, and upper back control   and strength back in order to start getting him to be better able to take   oral feeds, even if only a little bit at a time, again!

We   had his 4 month well visit (only 2 months late J ) on Monday. Tristan is now 17   pounds 9 ounces and 26 ½ inches. He has finally made it close to the 50th   percentile for both weight and height for his age group! WOOOOO   WHOOOOOOOOOO!!!

To   be exact he is in the 48th % for height and 53rd % for   weight. That was really exciting to find out. Most heart kiddos never even   make it on the charts! His doc was very happy with all of his vitals. His   lungs are clear and his liver is normal (an enlarged liver shows signs of   heart failure). Overall she was very happy with everything, aside from him   still needing oxygen but his cath tomorrow will hopefully correct that. Since   he does have a procedure tomorrow we had to wait on his immunizations again   but we go back in Monday to get them. Since he is behind on his shots, his   pediatrician said that the whole family needs to get updated boosters to help   protect him. Let me just say, can’t wait for those!! Ha ha NOT!

Yesterday   we had his neurology and pre-admissions screening! It was not such a fun day.   It started by me waking up late…grrrrrr, because my phone, which is what I   use for my alarm, fell (somehow) under the bed so I didn’t hear it. Very   irritating! Luckily my mom had headed over to pick up Ella so that she   wouldn’t have to spend all day at the hospital so I woke up when she got   here. Thanks goodness! Once we got on the road and to the hospital we started   our appointment day in neurology at 9:30, only be to taken back to the room   right away and then forgotten, yep actually forgotten, this was after getting   a call from Briah’s school saying she was in the nurses office, again,   with complaints on her knee- I had them send her back to class with ice and   the promise I would take her to the doc as soon as I could get an   appointment, I then called her pediatrician and scheduled her an appt for   3:30 later on in the day. Back to his neurology appt, they came in at like 11   to apologize and then said that his neurologist couldn’t come in because he   was really behind so they were sending in a different doc that has never even   seen T. It was ridiculous, this other doctor did not even look at Tristan,   didn’t do another EEG, he barely even looked at his chart. He started talking   about epilepsy and all sorts of stuff that had never even been mentioned   before then said, “Well let’s take him off the Phenobarbital and see how he   does” and proceeded to walk out. I stopped him and said, “Just like that? He   has been on this for 6 months don’t you think we might want to wean him a   little”. He thought for a sec and said, “ya, that would probably be a good   idea” then looked at his chart and said to switched from 4 mL once a day to 2   mL twice a day for two weeks and then stop it and we will see how he does. So   basically we spent 2+ hours to be told something they could have just told me   over the phone, especially since they didn’t even examine him.

Then,   we proceeded to go to his next appointment. I attempted to try and get   something to eat first but the cafeteria was packed and the lines were long   and I knew we wouldn’t make it to pre-admissions on time if I stopped to eat!   We did get to swing by the 4th floor and PICU to say hi to all his   favorite nurses that were working and managed to get to his pre-admission   appointment at 12:40, 5 minutes early –GO US!!! J They did his weight,   height, blood pressure, and checked his O2 saturations levels, everything was   tip top! We then went back to the room and waited…and waited…and, yep,   waited. At around 1:30 the nurse finally came back took some info that they   already had in the system, asked how he was doing at home and took some more   info and then said she needed to go back to the other computer cause the one   in the room was being slow and left us So again we waited…I called Sean to   update him and then Briah’s school to let them know I was going to be picking   her up from school to take her to her Dr.’s appt at 3:30, and after all that   we were still waiting. At 2pm I went out to tell the nurse that I had to   leave by 2:40 in order to pick up my daughter from school and to see how much   longer it would be, knowing that we still had to talk to anesthesiology and   go get his lab work done. She said it would only be a few more minutes. 10   minutes later I went back out saying I really needed to hurry, I then   suggested they just do his labs now instead of sending me downstairs-they can   do it there they just prefer not too- she agreed. It took her 5 tries and   over 30 minutes but she finally got his blood work, unfortunately she didn’t   restrain T properly and he pulled out his feeding tube, I was, during the   blood draw, busy talking with anesthesiology who managed to come up in the   middle of all this- T was due to be fed again in an hour and I didn’t bring   an extra NG tube, pulling out this one was not a convenient occurrence. If, I had been able to leave   right then it might have been ok but of course anesthesiology did not   understand the meaning of hurry and insisted on doing a full exam-even though   one had already been done twice   by two different nurses. Needless to say it was 3:05 by the time I made it   down to the garage and got everything loaded in the van, Briah gets out of   school at 3:10! I was gonna be late! I was luckily able to get a hold of her   and let her know I was running late but to be ready. Traffic, of course was   horrible. I called the doc to let them know we were running late only to be   told that if we were more than 10 minutes we probably wouldn’t be seen, just   great! I got to the school at 3:24 (I had to speed most the way: I HATE   SPEEDING), had to swing by the house to get a new NG tube so I could feed T   at 4, and then rushed to Briahnna’s appointment and got there at 3:50- 20   minutes late, only to realize that I didn’t have T’s 4:00 and 5:30 meds-   WONDERFUL! Fortunately, they let us keep the appointment. I got T’s feeding   tube placed, was told Briah’s problem was basically “growing pains” but we   did manage to het her booster vaccination and she got the flu shot as   well-plus she was able to meet the doc herself as it was her first visit, we   had to switch doctors since we moved!

After   that we went over to my sister’s to get Ella and made it back home at 5:20-I   ran in to get T’s meds and then waited for Sean to get home so that we could   get something to eat. I WAS STARVING as I hadn’t had time to eat anything ALL   DAY! As stressful as yesterday was it ended on a good note. We got to spend   time with the girls and T and I tried to remind myself regularly that all the   stress is worth it as long as Tristan is okay!

So   today we rest and spend time together before T’s interventional cath   tomorrow! I won’t lie, I am petrified! I know that this is nothing, danger   wise, compared to his last heart surgery, but it is still scary. T is still   recovering and he is still having problems from being intubated for so long   last time. I keep telling myself that he hasn’t fought this long and hard to   give up now, but I am just sooooo scared. I can’t loose him. I just can’t!

Please,   please, PLEASE keep him in your prayers tomorrow. His procedure should start   around 10 or 10:30 am- he is second case so it will depend on when they are   done with the first one on when T goes back. We have to be up at the hospital   at 9 and they will take him back when they are ready for him. He will   probably be staying overnight, just for observation but there is a small   chance he will get to come home tomorrow night! As long as he is fine I don’t   care if we have to stay for another month- I just want him to be okay. Wish   us luck for tomorrow. For now I am going to spend the rest of today cuddling   with my kids. ♥ Christy

sept 29

‎Wednesday, ‎September ‎29, ‎2010, ‏‎11:46:34 PM | smolby@gmail.com (Sean Molby)

So   pretty boring couple of days.. yesterday we didn’t do much aside from trying   to catch up on sleep. And today was pretty much the same we just had daddy   here with us.. well kind of. He was home sick today so I kicked him out of   any room T was in but Ella got to cuddle with him- she enjoyed that!Ella   has informed me over and over that she “loves her Tristan” it is so cute. And   Tristan will laugh at her all day and all she has to do is stand there. They   are going to be buddy, buddy as they grow up!Tristan   had no vomiting or spit ups yesterday YEAH! He did spit up twice today…but it   was mostly because he was being moved around right after feeds to have his   diaper changed- he has pooped like a machine today!! YUCK J

He   is so much happier at home and I have to say we are much happier now that he   is back. Which makes today’s phone call a kind of depressing one… they have   scheduled his interventional cath for October 7th at 10:30 AM with   a 9:00AM check in- it will be sooo much fun to sit around for an hour and a   half BEFORE his procedure! So next Thursday will be another long day at the   hospital but HOPEFULLY all will go well and we won’t have to stay   overnight-even though I think we might just so they can get his lovenox   levels the next day (STUPID SHOTS) L

He   has his GI visit tomorrow and I am hoping that they will okay him to start on   breast milk again, even though it will be mixed in with his Nutramigen   formula. If they okay it let us all hope there are NO BLOODY STOOLS again!   Let’s hope, let’s hope, let’s hope!

He   has been on a ½ liter of oxygen for quite a bit of today and he is doing   better sat wise than on the liter so we are happy about that. I may take him   down to a ¼ tomorrow if he keeps his sats up all night as well. He hates   getting oxygen so if we can give it as an “as needed” he would be even   happier. Although he does have fun pulling the canula out of his nose and   watching to see if I am paying attention or not. He laughs soooo hard when he   gets caught.

His   first home OT (post surgery) is Friday at 4:45. He is not doing so well with   anything in his mouth so I am really looking forward to getting him back on   track.

Not   much else to report. He is doing good and is back to my happy little boy. No   1AM withdrawals anymore. In fact, he is sleeping AWESOME he goes to sleep   around 9:30 or 10 at night and has stayed asleep till 9:30 or 10 in the   morning- he even slept through his lovenox shot this morning! He is also   taking better naps in the afternoon. (HE NEVER slept this good in the   hospital- in fact he slept horribly, poor baby) L

I   can’t say it enough. I am just SOOOOOOO THANKFUL to have him home and on the   fast track to getting better!

Until   next post ♥ Christy

Sept 27

‎Monday, ‎September ‎27, ‎2010, ‏‎11:09:54 PM | smolby@gmail.com (Sean Molby)

Busy,   busy day! Tristan   did great and is thoroughly enjoying being home. He has only thrown up once   and it was a small amount-I would actually constitute it as spit up. His   cough is getting better and his congestion seems to be slowing down a bit   too. All good news.He   is doing really well with his feeds and seems to be taking the weaning   schedule okay so far, but they are going super slow since he was having such   withdrawal issues.

He   had his home health nurse visit today and everything looked good. He now   weighs 16 pounds 12.5 ounces. So he is gaining weight pretty good!! He was a   happy camper all day and enjoyed getting to play with his sisters. It is so   wonderful to be back at home with my kiddos!

We   almost have his OT and PT schedules worked out just trying to coordinate with   our appointments and their availability. He will have 2-3 PT visits per week   and 3-5 OT visits per week. We are hoping to get him back on track. I have   not gotten him to take his pacifier again yet but I went to give him kisses   today and he started sucking on my lip LOL freaked me out at first but hey I   will take it. Since then I have been encouraging him to try his thumb he   likes to chew on it more than suck.

He   has his GI follow up this Thursday so hopefully we will get some good news   there.

Other   than lots of phone calls and deliveries the day was busy but pretty boring. T   got lots of good sleep which is much needed.

He   is still on a liter of oxygen and his saturation levels have been in the mid   80s which is AWESOME!!!! We could go down on the oxygen but if we do that the   humidifier that works with it is not effective and without that his nose and   mouth really dry up so it is better to just keep it a little higher and it   won’t hurt him to have his saturation levels that high anyway.

Overall   good day. His buddy Quinton will hopefully get to go home tomorrow which will   be exciting and we are super happy for them.

Thanks   for all the support from all~ hope everyone has an amazing week!! ♥Christy

September 26- finally at home!

‎Sunday, ‎September ‎26, ‎2010, ‏‎12:20:38 PM | smolby@gmail.com (Sean Molby)

We   are FINALLY home. Home Sweet Home!! It   was a long day yesterday. A LOT of waiting around. In fact, that is all it   was but since we are home we will take it. They   drew his Lovenox level (blood lab) at 1:15 PM yesterday and then we were told   that we would have to wait until they got the results and then we would be   discharged. So we waited…and waited…and waited…and, well you get the picture.   The results didn’t come back until 3:45pm and they were low…bummer but really   all they needed to do was increase the prescription dose and then we could   go. Or so we thought!

For   some reason it turns out that the CMH pharmacy could not fill the script it   had to be delivered to them from Home Health Care. So, after 2 more hours of   waiting and repeatedly asking when do we get to leave the Home Health Care   delivery person calls us in our room and says she is STILL waiting for the   orders but if we would like she could deliver the meds to our house tonight.   Well, you didn’t have to tell us twice we finished up our packing- the   fridgerated stuff and things we had to keep out till we left and then had to   wait for the discharge papers to be sent up. Finally got them, read through   them, and signed em, and then they said we had to wait for med delivery cause   home health care just called and said they were on the way up to CMH…not sure   why since she said she would bring to our house but whatever I didn’t care we   were getting out! We finally walked out the door with three wagons full of   stuff at 7:45 pm and arrived home at 8:15.

It   was a pretty good night. The best he has had since surgery, He did not have   his normal 1AM withdrawal episode but he did have a coughing fit that caused   him to throw up at 3:40 AM- he is okay and went back to sleep fairly soon   after and stayed asleep the rest of the night. He awoke in a good mood   smiling and happy this morning. He definitely knows he is home. AND HE LOVES   IT!!!! J

Getting   used to his new meds was a bit confusing- he has a total of 32 meds he gets   throughout the course of one day! He used to only have 11. So I had to sit   down and write a med schedule so I can make sure not to forget any.

He   gets:

Captopril,   Ativan, Lasix, Mylicon, Zantac, and Motrin at 1AM.

Methadone,   sween cream, and Tylenol at 5AM.

Captopril,   Ativan, Digoxin, Zantac, Lasix, Mylicon, Lovenox, sween cream, and Motrin at   9AM.

Methadone,   sween cream, and Tylenol, at 1PM.

Captopril,   Ativan, Zantac, Lasix, and sween cream at 5PM.

And   then Phenobarbital, Digoxin, Lovenox, Methadone, sween cream, and Motrin at 9   pm.

Poor   baby gets over 36 mL (7+ teaspoons) worth of meds a day plus two shots L but   he is such a trooper and handles em all like a man!

In   case you’re wondering what the meds are for:

-Captopril   is for lowering blood pressure and increasing cardiac output it is   vasodilator. —Ativan is a benzodiazepine sedative (part of his narcotic   weaning schedule)-it reduces withdrawal symptoms he will be on it until Nov   23.

-Lasix   is a diuretic-it helps him pee J.

-Mylicon   is for gas- he gets about 13 mL of air pumped into him daily when we check   placement for his feeding tube.

-Zantac   is for reflux and to reduce acid production.

-Motrin   and Tylenol help him with the body aches and pains just from surgery and lack   of movement from being hospitalized (sore muscles) and from his headaches   that he gets from how his heart is now working-the headaches should ease off   in time, they should actually be gone by now but he still seems to get em.

-Methadone   is similar to morphine (part of his narcotic weaning schedule)-it reduced   withdrawal symptoms he will be on it until Nov 21.

-The   sween cream is for his wrist- he is now allergic to surgical tape and when   they removed some from his wrist found a severe rash underneath-it is painful   and irritating for him but is getting better.

-His   Phenobarbital is for the possible seizures that he had at 5 days of age, he   has shown no other signs of seizures since then but they felt it safer to   keep him on it just in case-hopefully he will be off it on October 5.

-Digoxin   is also a vasodilator but it helps the pumping pressure of his heart-it keeps   his heart from having to work so hard.

-The   Lovenox is for his blood clot- it is a blood thinner he will be on it for   another 2 months and then switch back to aspirin.

He   is still on 120 mL feeds every 3 hours with 320 mL continuous overnight-for   now- and is down to only 45 minutes per feed but should be down to 30 minutes   by Monday night. We will start trying to space his feeds out a little more   slowly going to 4 hours in between each and eventually cutting out his   continuous feeds overnight all together. I am not sure how long that will   take- he likes to eat so it may take a while to start spreading his feedings   out to be how most 5-6 month old babies eat like.

He   should start his OT and PT home sessions next week or the week after. He will   get 3-4 OT per week and hopefully at least 2 PT but not completely sure yet-   he should get at least 1 per week to start and if he keeps showing signs of   improvement we should HOPEFULLY be able to start bottle feeding him again and   introducing cereals and then baby foods. Tiny baby steps with Tristan. He   likes to go slow and move at his own pace so we won’t be rushing him.

Lots   of appointments over the next month: A GI follow up on 9/30, his 4 month well   visit (1 ½ months late) on 10/4, a neurology follow up 10/5, his cath   procedure plus intervention 10/7, Lovenox level check 10/8, Lovenox level   check 10/14, G-tube/nissen surgery consult 10/14-surgery for that will   probably be a week or so later, hearing and special care clinic 10/25, and a   Hematology follow up and Lovenox level check 10/27. He also has his next OPM   (swallow study) on 12/1 so we really need to start getting stronger so that   he will be able to pass that- if he fails again I am not sure what will   happen but I know that they WILL NOT let him do anything orally for a long   while if he fails it again. So crossed fingers and lots of good luck needed   so that he will be able to do okay with that.

It   will be a super busy next couple of months but it will be beyond wonderful to   have my family all back at home again. I really miss my girls-they come back   today from my sister’s. With luck we will get back into the groove of things   in no time. I think it will take me about 2 weeks to get my house clean again   tho.

Jeesh   for not being here in over a month somehow it got trashed- go figure! I left   it fairly clean- at least I thought I did!

Also   the votes are in it was almost unanimous – I will do daily updates…at least   as much as I can. Some days may get skipped but for the most part it should   be daily.

Thank   you everyone for all of your support and prayers throughout this last month-   well actually since April. We are still not out of the woods. A lot of things   can happen, both good and bad, until the next surgery here in a couple years.   Tristan has a LONG road   ahead of him but he is a definite fighter and has a strong will to keep   going. He is a more complicated case of HLHS than most (that is what I was   informed of this last week) – I think it is mainly because of his first few   weeks of life. They did not expect him to make it to his first surgery so the   fact that we are at and through number 2 is a blessing!

He   is much stronger than they gave him credit for and he continues to amaze me   with his strength, determination, and veracity daily! He is one AMAZING little boy- and I am so   proud to be able to say that I am his Mom!! Remember to keep him in prayers,   especially with his next procedure being October 7- they have not given me a   time yet but I will keep you all posted ~Christy

9-24-10 heading home (hopefully) this weekend

‎Friday, ‎September ‎24, ‎2010, ‏‎5:41:23 PM | smolby@gmail.com (Sean Molby)

K,   so not much has changed. We ARE going home this weekend-or at least that is   the plan.They   have to check his Lovenox levels and then we are outta here!! Can’t say I am   not glad, though I will miss all his nurses J He   had his Physical Therapy today and did awesome!! He was so happy and laughing   through it all. He did really good with rolling over and his foot to mouth   and hand to feet work. I am soooooo proud of how well he is doing! My little   trooper J

Right   after PT he had Occupational Therapy. That went much better today than   yesterday. He was still in a good mood AND he was watching his baby Einstein   video so that only added to his happiness (HE LOVES THOSE MOVIES) he did   really good and was very tolerant of everything she was doing. She taught me   some new little tricks to help him and was very impressed with his response   to stimulation. He pooped out kinda early though but he has had a busy day so   I couldn’t blame him.

Speaking   of OT he took his pacifier last night for a whole 15 minutes. I was so freakin   excited!!! J That is the longest he has taken it since surgery. Up till then   I was lucky if I could get him to suck for a whole minute!!

Been   a busy day and tomorrow will be even busier, we should get out of here around   3PM tomorrow as long as everything goes as planned. SO MY EVERYTHING IS   CROSSED!

Thank   you all ~Christy

Sept 23 2nd update

‎Thursday, ‎September ‎23, ‎2010, ‏‎5:26:35 PM | smolby@gmail.com (Sean Molby)

Still by no means out of the woods, but   somehow when his cardiologist viewed his echo, the results came back   different…all I can say is: THANK   YOU FOR THE PRAYERS!! He   WILL need a cath and intervention but they feel confident he will be okay   until he is father out from surgery, so it is scheduled for Oct 7. They are   worried that if done today it could cause some major complications and even   waiting just two more weeks would lower the risks tremendously. They are   pretty sure they are going to have to either do an angioplasty or place   another stint in addition to some other interventional measures. Then after   his cath, hopefully, in another couple of weeks he will then get his   G-tube/nissen surgeries.

Now   we are back to the beginning; he has to restart Lovenox –they had to take him   off for the cath that was planned for today- and then recheck his levels   after 3+ doses. They ARE sending him home on oxygen and suctioning with the   knowledge that until the cath his saturations will be lower and they are okay   with that. No new discharge date but I am hoping by Saturday! FINGERS   CROSSED!!!

We   have a new set of “signs to look for” and steps and precautionary measures to   take in case things get out of hand before his cath. Still pretty scared but   feel much better, especially since his cardiologist and surgeon are both on   the same page with this.

Tristan   is doing good. He is back up to 1 liter oxygen but that is for precautionary   reasons and so that the humidifier attached will be more effective. His   secretions have slowed some and he is doing a fairly good job of coughing it   up on his own; only suctioning him every 3-4 hours now as opposed to hourly.   He is still having some withdrawal issues but is doing better at overcoming   them.

He   is such a fighter and despite it all stays mostly happy and in good   moods….though he does have his bad moods and boy are they bad! (He must get   that from his dad –ha ha J ) I am hoping that once all the procedures and   weaning of meds is done he will be back to his all the time happy self, cause   he is an absolute doll when he is in a good mood but I will definitely take   him either way.

We   still need lots of prayers and I thank you for the ones already given. If you   could also add some good thoughts and prayers to help us through this in a   financial sense it would be appreciated as well. We will not be getting SSI   this month because T has now been in the hospital for more than 30 days. This   is huge as it is the only supplemental help we get to make up for me not   being able to work. We have the fundraiser garage sale coming up-Thanks to   Francine Steiner, and some family and friends have mentions another   fundraiser of sorts-I have no details yet on that- and we still have some   stuff we are trying to sell so if we could get some good luck prayers with   those that would be great and very helpful. Despite everything still have to   pay the bills. L

Again   thanks you all! FYI- Quinton is doing good. Vent is turned off but not out   yet, they have also taken him off all the narcotics-so keep all the prayers   going for him as well!

9-23-10 WE REALLY NEED SOME PRAYERS

‎Thursday, ‎September ‎23, ‎2010, ‏‎12:51:28 PM | smolby@gmail.com (Sean Molby)

Oh,   God PLEASE help us… The new echo is in and the results do not look good. I   don’t have a lot of info, in fact hardly any at all, the docs are all going   to come up and talk to us here in a few. I am really scared for Tristan please   take a minute to say some more prayers. They may have to do an emergency   procedure-don’t know what kind or anything, except that right now anything   will be pretty dangerous since he is still so close to post op. ( Ideally   they like to wait at least 6 weeks before doing anything even slightly   evasive. PLEASE, PLEASE, PLEASE take a moment to pray for him!

September 22 -over 4 weeks post op but still going strong!!

 

Hybrid Stage Two (The “Glenwood”)

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