Our little HLHS Hero
|Tristan had his appointment with cardiology Monday and it was a rather stressful and fairly traumatic appointment. For those that don’t know Tristan has not been feeling too good lately. He has been congested, runny nose, possible sore/irritated throat, no fever (thank God) but he has been pretty fussy and has refused ALL oral feedings. I contacted the hospital last week concerned and wanting to find out what I should do, as they had wanted to do his surgery on Monday, August 16th –though that ended up falling through. Needless to say calling the hospital turned out to be a bad thing because Tristan’s nurse was out and so I had to contact the cardiology clinic in an attempt to get through to his cardiologist. The nurses there gave me the run around and I ended up speaking with someone who turned out to be new, well she decided INSTEAD of contacting Dr. Kaine (Tristan’s cardiologist) like I was asking she contacted surgery….HUGE mistake, they then took her interpretation of what I was saying and cancelled all possible surgeries for Tristan for the next FOUR WEEKS. That would not be such a big deal if Tristan would be strong enough to survive that long, however he is not. His first stage procedure is rapidly expiring and if surgery is not done soon- in the next 2 weeks he will no longer be a candidate for surgery and they will simply provide comfort care until he is no longer with us.
THIS IS NOT A POSSIBILITY FOR ME. Sorry, but Tristan has not fought this hard and over come so much to just give up now. So, I was rather freaked out and incredibly pissed off when Dr. Kaine informed me that because I told surgery that he was severely ill they refused to do surgery, especially since I did no such thing. Thankfully it all got straightened out, kind of. I explained that we tried to get a hold of him last week for info on what we should do and signs we should look for; assured him that I didn’t know what was wrong with Tristan just that he is not acting normal and that is why I was calling and that he at no time has had a fever or other signs of severe illness. Just the runny nose, coughing, etc, which I said could still be a symptom from being intubated, or possibly allergies, or we had even discussed the slight chance that he may be teething. I told him I just didn’t want them not knowing what was going on when we have such an important surgery coming up. We then all found out about the other nurse contacting surgery and so on and so forth. Anyways, after a checkup and reviewing Tristan’s case Dr. Kaine personally contacted his cardiac surgeon and discussed the emergent need for Tristan to have surgery now, as his echocardiogram is showing a significant decrease in pressure in the valve that started showing blockage just a couple of weeks ago-meaning it is closing and at a faster rate than is safe- and assured him that he did not seem to have any respiratory infection that should cause any difficulties with surgery. Luckily Dr. O agreed and they decided that the complete need for surgery ASAP outweighed the slight risk of Tristan feeling somewhat off and grumpy. Cause without the surgery he WILL die but with it he has a chance.
Sooooo, surgery day is now fast approaching. It is scheduled for this Tuesday, August 24 at 7:30 AM- Tristan’s will be the only surgery for his cardiac surgeon that day.
This is a terrifying scenario for a mom, to know that my baby boy is going into open heart by-pass surgery. I have cried more in the last two days than I have since he was in the hospital the first time. To have to go through all of that again, I am not going to say I can’t do it because I can and I will. I will do whatever it takes to help Tristan through this but it is very hard and heart wrenching to know what he will have to go through at only 4 ½ months of age. This will be his most critical surgery.
It will be long (6+ hours), it will be invasive (they are doing 2 ½ procedures as opposed to the normal second stage of just 1), and it will be dangerous (he is younger than most who go through the 2nd stage and in a sense weaker)
I have to believe that God has brought him this far for a reason and it is not to just give up on him now. He has to make it through this next hurtle.
I can not imagine not tucking him in every night for bed or waking up to his beautiful smile every morning, or not watching him smile up at his sisters as they talk to him and play with him. He is more precious than words. So sweet and perfect and just wonderful. He is such a joy-I hate that he has to go through this, if I could trade hearts with him I would in a millisecond. It is so not fair that an innocent baby has to go through this. Being at the hospital I saw so many little ones fighting for survival. Amazingly I watched as these tiny little wonders fought through what most of us can never imagine, they have more strength and determination that seems possible; and sadly I watched some not make it, and I cried with their parents as they passed on.
I would like everyone to do me a favor. After you get through reading this, the first chance you get, I want you to go to or call your kids, (and other people you love) and tell them. Tell them how much they mean to you. Tell them what they mean to you. And don’t just tell them today, tell them often. So many times we take for granted the days we have. Don’t waste the ones you have. Cherish them and your kids. Give em a hug and tell them how wonderful they are for no other reason than for them to know how proud of them you are and how loved they will always be!
And if, when you’re done, you could get down on your knees tonight and again Tuesday morning and pray for Tristan we would be forever grateful. All your prayers got him through last time and he needs them even more now. Please if you are a church member ask your congregation to pray for a safe and successful surgery this Sunday. Light a candle, do whatever it is you all did last time. If we have as many people praying for him this time as we did last April –May he will feel it and he will fight because he will know how much we are all rooting for him! I believe this with all my heart.
Thank you everyone for everything and please, please pray! ~ Christy
Monday, August 16, 2010, 4:32:12 AM | email@example.com (Sean Molby)
|cant sleep so figured I would do an update since I didn’t get a chance to Friday. Surgery has been post poned as Tristan got sick… no big alarms as of yet. It only seems to be a minor cold but he needs or rather has to be at 110% before heading into this next surgery. He has another cardiology appointment tomoorow so they can take a look at him and then reaccess him. It did go well when they presented him at the Friday cardiology conference. Everyone was in agreement that he is ready for his next stage, minus the cold of course. They are extremely happy with his growth and developement.
Due to his cold his occupational therapy has been slow because he has a sore throat and refuses to swallow anything…but we keep trying! We have some pretty good goals set up for him over the next few months. OT agreed that he should be taking 50% of all his food orally w/in the next 6 months , as surgery will likely set him back a month or two that is still a realistic goal (whenever these babies go into the hospital for a prolonged stay they generally regress 1/2-1 month per week they are in the hospital). PT would also like for him to be sitting by himself and moving, whether by rolling or crawling to reach a desired toy. Again this is w/in 6 months. They are being optimistic as Tristan is already doing so well. Much better than he should be. He is already sitting barely supported for several minutes!!!!
It has been a long week as most everyone in the house is not feeling to swell, not sure how we all got sick but luckily it hasn’t gotten too bad. We just pray that we all recover quickly. I will try and type some more when I get some news later on today. hope everyone had a great weekend. Remember to hug and kiss your kids and make sure they know how much they mean to you!!! So many times we take that abilty for granted. Never miss a chance to let your kids know how much they are loved and adored, they are more precious than anything else you have. K going now since I am rambling, think I might acctually be able to go back to bed and get some more, or rather some sleep. Enjoy the sunshine this week!
Monday, August 09, 2010, 7:00:17 AM | firstname.lastname@example.org (Sean Molby)
|This post will be a short one as I am exhausted and have to get back to Tristan, who is crying as I type 🙁 Tristan’s procedure on Friday went good. No surprises with the exploratory cath. They did not need to balloon or put a stent in which is good. The tentative date for his second stage is August 16, so next Monday. That is not set in stone there is some more testing they need to do first but they did say his surgery will be next week sometime as long as no other emergencies bump him back.
He has been real fussy and grumpy since Friday, thank goodness for Sean this weekend. I have been up with him most of every night since Friday night and Sean has helped out during the day so I can get some sleep. We are not sure why he has been so fussy, he really should not be from what the doctors say but they had to try the cath in both legs as when they went in his right leg it did not go through so they had to go through the left. Soooo, I think he is in some discomfort there. I am hoping that with in a couple more days he will be back to his normal happy self.
Thanks to everyone who said a prayer and kept Tristan in your thoughts this weekend. I will let everyone know more when I find out more myself…
Thursday, August 05, 2010, 11:20:53 PM | email@example.com (Sean Molby)
***!!! HAPPY 4 months in 2 days TRISTAN DRAKE!!!***
Well I am sitting here unable to get to sleep so I figured I would go ahead and do an update since I probably will not get a chance to do one tomorrow.
Tristan has his cath procedure tomorrow, Friday, August 6 starting at 9 AM, they do not expect any complications but he still has to be put under anesthesia and there is always a risk with that. It is suppose to just be a basic cath but there is a slight chance they will have to place a stint or balloon the artery that is showing a blockage. It will all depend on if his cardiologist feels that he will be okay until his next surgery without that intervention. The main purpose of this procedure is to get measurements to access when the best and safest time for the second stage of surgeries for Tristan’s condition should be. My own personal feeling is it will be within the week of August 16-August 20, I know it can not be any time next week regardless of what they find because he must be taken off aspirin for at least a week before his second stage surgery and he is still taking that med, so we will have a weeks notice because of that.
Even though this is a simple procedure in comparison to everything else he has been through PLEASE remember to keep Tristan in your prayers tomorrow morning and after noon! I will post an update by Sunday evening unless there are major complications that prevent me from doing so.
On a lighter note, Tristan is STILL thriving amazingly well. He weighed in at 13 pounds 11 ounces at today’s visit; he is still just over 24 inches in length! He got to see a few of his 4th floor nurses today and the ones that have not seen him in a month or so could not get over how much he has changed. One even made the comment that you can’t even tell he is a heart baby he is so healthy looking!
He is doing really well with his oral feeds as well. He averages between 20 and 60 ML each feed (still just the 2x per day) and LOVES the fact he gets to eat on his own, he is all smiles when he is done. We have had to increase his Mylicon by an extra two doses a day because taking food from the bottle is causing him a lot of gas and with the gas some tummy pain; but he is still a trooper and keeps trying hard and improving everyday.
His new favorite thing is to fall back on the bed… as part of his Occupational/Physical Therapy we practice sitting up, which he is doing much better at. Anyways, the exercise consists of laying him flat on the bed (or another flat surface) and getting him to grab my fingers and help pull himself up. He was doing super great until he found out how fun it is to make himself fall back on the bed! So now he barely makes it an inch up when he drops himself back down and laughs hysterically. It is soooo cute but not as helpful and productive as it was when he managed to pull himself all the way up! J
Despite everything I am beyond thankful for all that we have been blessed with. Tristan is an AMAZING MIRACLE and I can not imagine him being anymore perfect that he already is, half a heart and all! I have to believe that he has fought above and beyond all odds and will continue to do so because he wants to be here with us as much as we want him here. I will continue to believe that he has not fought this hard to stay alive only to not make it through this next huge step. However, that doesn’t mean I am not scared shitless (sorry) and have endless nights and days of constant worry. Every night I have to go to sleep with the knowledge that it could be his last night with us despite all he has overcome. Every day/night until his third stage is a danger and even then a slight danger is always there. I can not begin to express how much he needs and benefits from everyone’s thoughts and prayers and I hope that even as things are going well for Tristan you remember to keep him in mind as these babies are known to have fatal set backs even if everything appears to be going great. It is through the strength and devotion of all our family and friends that has made and kept Tristan so strong. Trust me when I say he knows how much he is loved and cared for. He senses all that every one of you do for him**** PLEASE KEEP IT UP! ****
Until Sunday~ Christy
Sunday, August 01, 2010, 11:47:21 PM | firstname.lastname@example.org (Sean Molby)
|Last week was extremely eventful and busy. On Monday’s home visit we found he is still gaining as well on the Nutramigen as he was on the Elecare. He is now 12 lbs and 9 oz. His feeds are now up to 120 ml over 30 minutes-what a little piggy J His blood pressure is still really good and she has no new worries with him. After that we got to visit with his new friend Henry (who will be 1 in about 3 weeks), who also had a rough start in life and his mommy, Christie, a friend of mine from the SPED class I worked in Lawrence. They came up to see us for a while. It was awesome to get to see them especially seeing how well Henry is doing and how far he has come. Henry developed a huge crush on Briahnna; he is really into older women! J
Tuesday Tristan got to go to Deanna Rose Farmstead with his two big sisters and all of his cousins-we also met up with one of my old daycare families. It was neat to see how much they have grown just in the last few months and also sad cause it reminds me of how much I miss them. It was REALLY hot so we didn’t stay long and we all opted to hang out at the pool, the kids had a blast and Tristan was hilarious chilling out on his floaty in his shades and sunhat! It was nice to just act normal for a while.
Wednesday, Tristan had his cardiology appointment and his occupational therapy evaluation. Both appointments went well. The OT re-evaluated Tristan’s oral eating skills and assessed that he would benefit from starting small oral feeds twice a day with a slightly thickened formula, and his cardiologist readily agreed that it would be good for him. So he now gets to eat two times a day for 15 minutes each feed with no limit to how much he takes as long as it is taken within the 15 minute time frame. So far he is averaging about 30-40 ml each feed which is pretty good considering he has not eaten orally in almost two months. He, of course, loves it! He has been ready to eat by mouth for a while now.
His cardiology appointment went good but gave us some alarming news. He had another EKG and an echocardiogram; the results from the tests are showing a blockage in one of his arteries that was not there a month ago. However, this was something they had anticipated happening with the Hybrid procedure so all it means is that he is now in need of his next surgery. It is a little earlier than what we had hoped but they are very happy with his growth and recovery while being at home. He has another catheter procedure scheduled for next Friday, August 6 at 9 AM, so PLEASE remember to keep him in your prayers during that time. After they get the measurements from his cath. procedure they will determine how soon they need to do his 2nd stage of the surgery. Regardless, it will be done before the end of August.
It wasn’t completely unexpected news, I had a feeling about this all week but it is still very heart wrenching and stressful thinking about having to go through this all over again! I just pray he has grown enough and is strong enough to make it through as well as he did with his last surgery!
Since he had such a big week we kind of just hung out at home and rested on Thursday, Tristan was a bit fussier than usual which we have found out is from eating orally -go figure- he has a lot more air than he is used to so we upped his mylicon from two times a day to three or four, so far it has seemed to help.
Friday we went to the drive-in theatre with the girls and Caleb. Tristan thought it was great; he loved seeing the pictures move on the big screen. It was Ella’s first time as well; she was all over the place! She seemed to think the big open space was much better than watching the movie J daddy had to deal with her since I had Tristan, eventually she settled down and crawled in the back of the van and cuddled with Tristan and me as she fell asleep.
Saturday was a lazy day for us again. I stayed home with Tristan and Sean took all the other kids out for a day of fun since it is Caleb’s last weekend here. He is moving to Florida on Monday. It was nice just spending time holding Tristan but I missed the kids and was happy when they were home.
Today was pretty uneventful as well; we went to an early dinner with grandma and grandpa and hung out with them for a few hours. Then we came home and cleaned a bit and started to organize the playroom downstairs. I can’t begin to tell you how much fun that was! J
Next week will be another busy week. He has his home visit and OT tomorrow. His cousins are coming over on Tuesday, Briah has school enrollment on Wednesday, and then we have preadmission at Children’s Mercy on Thursday and then his procedure on Friday. So until and even after then please remember to keep Tristan in your prayers as he is in need again of all the strength and help he can get as we face this next stage!
Again, Thank you all for everything
Saturday, July 24, 2010, 12:03:14 AM | email@example.com (Sean Molby)
|Just a quick update. Tristan continues to do well at home. He is getting so big! He is now 12 pounds 1 ounce and that was at his home visit last Monday so he is actually probably closer to 12 ½ pounds by now.
His first Occupational Therapy evaluation visit was last Tuesday. The lady that came was really nice but unfortunately will not be Tristan’s case worker, but she promised to send someone amazing for Tristan. She was however very impressed with how well Tristan is doing. She was astonished by his good coloring and how well he interacts with people.
He pulled his NG tube out again earlier this week-the little turkey, that is his 6th time- he was all smiles and giggles with that one. He is soooooo proud of himself when he does that, poor thing hates that feeding tube in his nose. Hopefully only a little while longer and then maybe he will be able to eat on his own orally!!
hint, hint: That is what needs to be in everyone’s prayers now!!!
His next cardiology visit is this Wednesday, July 28. We will probably find out an estimated time on his next heart surgery and then will discuss further if the G-tube will really be needed.
On a last note, just to give everyone a heads up, since my schedule is beyond busy I have attempted to set up a better, or rather a more organized system of scheduling my time and I figure if all goes well I should be able to get an update up every Friday evening.
So that is my new goal to have some sort of update once a week and it will be on Friday! Unless something major happens that will probably be the only time I will be able to get anything up. Thank you all again for all the prayers and thoughts.
Also, we are having a HUGE fundraising garage sale for Tristan tomorrow-
July 24 from 8-3. Feel free to stop by. Tristan will be there as well as Sean and myself.
The address is (you can google for directions)
517 NE Emerald Drive Lees Summit, MO 64064. (There will be another one at a later date in Lawrence)
Monday, July 12, 2010, 9:26:30 PM | firstname.lastname@example.org (Sean Molby)
***!!! HAPPY 3 months and 5 days TRISTAN DRAKE!!!***
First off, again, I AM SOOOOOO SORRY that there has not been a post in such a long time but to be fair to me I have been beyond extremely busy… so be forwarned this is a LOOONG posting!!! J
To start with, Tristan is doing AMAZING!!! The doctors are very happy and even more shocked at how well Tristan is doing at home. He is now, as of this morning’s home visit 11 lbs 6 oz and 24 ¼ inches. He is gaining an average of 1.5 ounces per day! Their goal is only ½ to 1 ounce per day. When he was born he was 7 lbs and 18 ¼ inches long so in the 2 ½ months in the hospital he only gained a little over 1 pound and 2 inches. His last day in the hospital he was 8 lbs 8 oz and 21 ¼ inches, so in a little over 1 month he has gained nearly 3 pounds and 3 inches, so you can see how much better he is doing at home!
His oxygen saturation levels are still pretty good. They remain in the low 80’s/upper 70’s. They will lower naturally as he grows which is what is expected, the 1st surgery is only expected to last a few months. They anticipate that his next heart surgery will be somewhere between late August and October-but definitely before RSV season starts. For those of you that don’t know his 2nd surgery is his most dangerous, normally it is the 1st but he did not have the traditional Norwood-he was not stable enough to survive it- he had the Hybrid which is less invasive for a 1st surgery which makes his 2nd surgery even more of a risk than the traditional Norwood because they have to undo the Hybrid, then do part of the Norwood and all of the Glen. (these are the names of the surgeries if anyone is interested in googling them for info), I refer to his 2nd stage as a Nor-Glen which the doctors have found humorous and accurate so that is the unofficial new name for it at the hospital. J His color still remains really good. He is still his normal, abnormal pinkish color, as usual, he defies all odds. (Statistically a heart baby is a pale bluish/gray color, Tristan, however, usually has the coloring of a normal healthy baby).
Tristan had his first GI follow up visit last week and she was speechless at how much he has changed. She said she was prepared to argue that there was no way he would be ready for another swallow study and oral feeds but she was astounded at his developmental advancement and said she honestly didn’t know how he would do. She is leaving it up to occupational therapy, which his first appointment with them is July 20th, but she did say that if he was her baby, just because of the risk involved, she would wait until after his 2nd surgery to do anything orally (only because any lung infection or damage would greatly reduce his chance of a healthy recovery-oral feeds if he aspirates could cause him to develop pneumonia). She has switched feeding formulas for him from Elecare, which is $50/can and costs us an average of $400/month to feed him to a less basic formula, Nutramigen. It is only $25/can so that cuts his monthly feeding cost in half. He will most likely be on that for a month and then we might be able to start introducing breast milk again, so I am still pumping and remain on the restricted diet.
For those that didn’t know there is still the possibility Tristan has a breast milk allergy and since he was diagnosed with NEC (necrotizing entercolits) he was started on an extremely basic formula- it is already broken down so all he needs to do is absorb it-no digesting necessary. The Nutramigen is still fairly basic but not fully broken down so he will have to start digesting some, this will lower his weight gain slightly since he will burn calories to digest his food but he should be fine. Because of his possible allergy I was put on a restricted diet so that when we reintroduce breast milk he hopefully will do okay. The diet consists of removing dairy, soy, peanuts, tree nuts, eggs, and wheat products from my diet which basically means all I can eat is animal meat that is usually just cooked-no flavoring aside from herbs, and then raw fruits and vegetables, since most cooked ones only taste good with butter. I get to gradually add each restricted food group in and then based on how Tristan reacts to it we should be able to see what triggers his allergic reaction. I have now added wheat in so I am only restricted from eggs, peanuts, tree nuts, soy and dairy products. It is still really hard and frustrating but on the plus side I have lost TONS of weight which is nice. But I REALLY, REALLY miss chocolate! J
He is now taking 95 ml of formula every 3 hours which is up from his original 75mL/3 hours and he is up from 20 calorie formula to 24 calories, which is partially why he is growing so well….he is a little piggy. He will probably be up to 100 ml by the end of next week because he is getting fussier right before his next feed again!
There is still debate over him getting the G-tube. Sean and I are both a lot more comfortable with him having the surgery now that he has had a chance to recuperate and grow some but we do not want it if it will even remotely affect his ability to recover easily from his upcoming heart surgery. The GI doctor said she would like to wait until after his 2nd heart surgery since he is doing so well with the NG feeding tube and with the possibility that he will do fine with oral feedings by then. The heart surgeons are still pushing for the G-tube surgery so we really don’t know what is going to happen there. The GI doc said she was going to call his cardiologist and discuss in detail and length the pro’s and con’s of it and then they would present it at the next heart conference- which is held every Friday and then we will get to talk to his cardiologist about it at his next cardiology appointment scheduled on July 28th. So there will be no news about that until then.
Developmentally Tristan is above and beyond what they expected. He is developmentally age appropriate and according to “statistics” he should not be- you see now why I don’t believe too much in statistics! He is smiling and laughing, and loves to make cooing sounds and bubbles with his mouth. He holds his head up and can actually pull himself forward in his car seat and swing, when not strapped in. In fact he finds that quite humorous until he realizes he is stuck with his head by his feet because he can’t pull himself back up just yet. He has not yet rolled from front to back or back to front but they are not too worried since the normal age range for rolling over is 3-4 months. It would help if he didn’t scream like a banshee like he usually does when placed on his belly which I cant allow him to do because it is too hard on his heart; but he still has time and if he doesn’t make that milestone when normally expected it is really no biggie especially since being in the hospital he should be more developmentally aged at 1 month instead of his age of 3 months. He starts his home occupational and physical therapy next week so that will help as well.
He has become rather spoiled and does not like to lay or sit with nothing there to entertain him, so I have been searching for different mobiles and such to help stimulate him when he has to lay down for his feeds and such, it has been hard to get much done cause if he gets to crying too hard I have to hold him to calm him down so that his heart rate won’t get to high, he has learned rather quickly the results of crying so he gets held a lot more than necessary but I don’t mind. Not getting to hold him for the first month kind of makes it not so hard to hold him all day now.
For now things seem to be going very well. He has weekly home nursing visits, a weekly call from a special case nurse through our insurance company, and for now, weekly occupational/physical therapy home appointments. His cardiology appointments are every 3 weeks, his pediatric appointments are about every 2 months, his GI appointments will be every 3 months, and his neurology assessments will be every 6 months. Our days are exceptionally busy but well worth it to have him home. Since I am telling you everything else I will give you a description of a typical day in our home:
6:30 AM overnight feed goes off/flush his NG tube (Sean usually does this)
7:00 AM Tristan wakes up-diaper change- I sometimes get to take a shower and get ready for the day at this time-but not always J
7:45 AM start 8:00 feed (make 24 ounces of formula, warm up 95+ ml’s, check feeding tube placement, reprogram feeding monitor for the day, start feed)
8:30 AM feed goes off/flush line
9:00 AM give morning meds(1/4 tablet aspirin, .3 ml lasix, .4 ml digoxin, 1 ml zantac, .3 ml mylicon)
9:15 AM Ella usually wakes up-so change her diaper and feed her breakfast
9:30 AM Tristan: change diaper/change clothes for the day, Ella: change clothes, brush teeth, do her hair
10:30 AM art time for Ella
10:45 AM start 11:00 feed (warm up 95+ ml, check placement, start feed)
11:30 AM feed goes off/flush line-diaper change
12:00 lunch time
12:45 PM try to get Ella to lay down for nap (has not worked so well lately-it usually takes me 1-2 hours to get her to sleep)
1:45 PM start 2:00 feed (warm up 95+ ml’s, check placement, start feed)
2:30 PM feed goes off/give .3 ml mylicon/ flush line-diaper change
3:00 PM theoretically Ella wakes up from nap- but not so much so lately
3-5 snack time somewhere in there J / outside play for Ella
4:45 PM start 5:00 feed (warm up 95+ ml’s, check placement, start feed)
5:30 PM feed goes off/flush line-diaper change- start making dinner
6:00 PM dinner / do the dishes
7:45 PM start 8:00 feed (warm up 95+ ml’s, check placement, start feed)
8:30 PM feed goes off/flush line
8:45 PM bath time for Ella and Tristan
9:00 PM give evening meds (4 ml Phenobarbital, .3 ml lasix, .4 ml digoxin, 1 ml zantac, .3 ml mylicon)
9:15 PM get Tristan ready for bed / start getting Ella ready for bed
10:15 start Tristan’s overnight feed (warm up 270+ ml’s, check feeding tube placement, reprogram feeding monitor for the night, start feed), place O2 probe and turn on oxysimilator (saturation monitor), turn on Angel monitor (it is a SIDS monitor that alarms if there is no respiratory movement at least every 10 sec, change his diaper again and swaddle him up for the night. (It is really important that Tristan cannot move his hands and night, if he were to pull out his feeding tube during a feed at night it could kill him)
I usually get to sleep myself somewhere between 11 and midnight. At some point during
the day I try to spend some time with Briahnna and then I also have to find time to get the
basic house cleaning and laundry done-not as easy as it sounds. Occasionally we get out
and go over to grandma and grandpas so the girls can ride the horses and just get out of
the house. My goal is to start going on walks everyday even if only for a few blocks so
that Ella and Briahnna don’t feel so cooped up. Briah has spent quite a bit of time with
my parents and also my sister so that she isn’t so bored and she has had a few friends
over to spend the night too. On top of all this we are trying oto potty train Ella and get her
to sleep in her new room-neither one is going too well. But basically this schedule is the
reason I really have not had time to post. I started typing this one at around noon and as
you can see it is finally getting posted around 7:30.. J Overall, as I have said before,
despite the busyness everything is wonderful. It is amazing to have my family together at
home and to see Tristan doing so good. So keep praying that everything keeps going so
P.S. Tristan IS allowed to have interaction with people so if anyone would like to come
visit just let me know. I wouldn’t recommend just stopping by as we do have a lot of
appointments ands so we are not always home. Thanks again everyone for all of your
love, prayers and support!
Saturday, June 12, 2010, 5:28:34 PM | email@example.com (Sean Molby)
|So much has happened this past week. Tristan is still doing good, gaining weight everyday. He is up to 8 pounds 8 ounces! He is smiling and laughing now when he sees me and we even got some good pictures of it but Sean has not had the chance to update the photos lately.As I mentioned in the last post Sean and I had discussed not going through with the G-tube surgery for feeding, however the doctors had different ideas. We were expected to get to go home last Wednesday with no surgery but then a new complication arose….statistics! We spent most of last week arguing and debating over what is the next best step for Tristan. The doctors are worried because apparently statistics show there is a high mortality rate (risk of dying) for a heart baby, especially one that has had the hybrid like Tristan has, if an NG feeding tube is left in after surgery. They don’t know why but the risk of (basically sudden) death is 20%. That is about the same risk as his 1st heart surgery. I can not begin to explain how scary that is.
The problem is another surgery even as basic as G-tube could be dangerous for Tristan as well, but no one knows “for sure” the best solution for him. The doctors want the surgery because it is an easy fix. We and most the nursing staff are not sure how Tristan will do. His “statistics” show a hard time of recovering from very simple procedures but he is stronger now and doing much better than he has in a long time. It is too early to do another swallow study because of the risk of excessive radiation. Personally I had a horrible feeling about the GI surgery until Sean and I decided to not go through with it.
Ultimately the decision was taken out of everyone’s hands as the surgical team made the decision early this morning and refused to do any surgery on Tristan, that wasn’t life or death, this close after recovering from the NEC. They did not consider the GI surgery a necessity and said if the doctors still wanted it in 6-8 weeks they would re-evaluate him then.
Soooooo, we are not back to square one. No surgery, the NG feeding tube stays and Tristan is to be discharged to come home for his very first time in a couple of days. We have to wait for some home health care equipment to be ordered and delivered before he can come home.
I am not going to lie; I am scared to death for my baby boy. What if I am wrong, what if the surgery would have been better. I don’t know what I am going to do if anything happens to him. All I have left is to ask all of you out there to please pray for Tristan and our family as we bring him home. Please pray that he has no complications and that he keeps growing and looking healthy. Pray and please ask that he be allowed to stay here with us to live the life he has tried so hard to fight for. Just please pray! ~Christy
Monday, June 07, 2010, 1:19:55 AM | firstname.lastname@example.org (Sean Molby)
|Tristan has been taking his feeds all weekend with no problems! They didn’t start Friday as originally planned but started Saturday instead, no medical reason for it; the intern didn’t learn how to count while in medical school and he added too many days on, it won’t hurt Tristan just delayed his feeding a day-very comforting to know that someone unable to count days on a calendar has medical say in my sons care but oh well J ! They started him out on 5 mL continuous drip for 3 hours, that is only a teaspoon, they did that for 8 feeds-so 24 hours- then they bumped him up to 12 mL for 3 hours for a few feeds, then 14 for 4 hours, and then they will do a slow bolus(all at once) feed of 45 mL over 2 ½ hours at 1:00 am (June 7) then wait another 1 ½ hours and do another 45 mL bolus over 2 hours (this will be a 5 am). After that they are not sure how they will proceed, they want to see how he will do with what he has been given so far to make a decision. They are going much faster than we had thought and that is kind of nerve racking but so far Tristan has handled everything well. He has only had one stool so far but there were no traces of blood in it so that is good.
No other big news. For the next week or so it will just be a waiting period and we will have to see how Tristan does as he is the boss. Sean and I have talked and we did make a tentative decision to for go the GI surgery and just keep Tristan on a NG feeding tube (through his nose) we have not discussed this further with the doctors yet but it is ultimately our decision and we just feel right now another surgery is just too much for Tristan and may compromise his ability to recover from his next open heart by-pass surgery here in a few months. As that will be his most dangerous surgery of all we feel it is important for him to be as rested and for his body to be stress free for as long as possible. This decision may changes as does so many things but for now that is what we have decided on. Hope everyone has a great weekend! ~Christy
Friday, June 04, 2010, 11:49:54 PM | email@example.com (Sean Molby)
Happy 8 week Birthday Tristan!!
Today was a trying and stressful day! It turns out I was correct and Tristan’s hemoglobin had dropped from 13.7 to 12.0 (this is a lot) in less than two days, so we needed another transfusion and that meant another IV. It took two different teams, three hours and four tries but we finally got one in, poor Tristan has been stuck so many times he probably feels like a pin cushion.
He looks much better and is back to his normal, abnormal pink color (ha ha)– for those of you that don’t know a normal unsick baby is usually a pink color, so that is normal; but for a sick and especially a heart defect baby their color is usually pale or grayish, however Tristan is not normal even in his abnormality and he is, against all medical odds, “normally” very pink! (hope that wasn’t too confusing) J
Not much else happened today. Tristan is now resting peacefully and most likely will stay asleep through the night!
Also, he is finally getting bigger!!! He is now 22 ½ inches and weighs 8 lbs 2 oz. Up from his birth and 1 month weight of 7 lbs .04 oz and 18 ½ inches!!!!
Thursday, June 03, 2010, 2:17:29 PM | firstname.lastname@example.org (Sean Molby)
|Yesterday they had a hard time placing or rather replacing Tristan’s PICC line. They dried to put in a double lumen but his vein was not large enough to handle that much so they had to switch to a single. A single line will work for him but it means that if he has to have another transfusion they will have to run another IV to give it because transfusions take 4 hours and he can not be off his lipids and TPNs that long-they took him off for an hour yesterday and his glucose dropped down to 40 (that is really low). When placing the line he lost more blood than they figured he would so when we went in to see him he looked scary pale. Of course he had another new nurse yesterday so she didn’t think anything of it, since most heart babies are paler-Tristan however is not and we he is it usually means his hemoglobin had dropped dangerously low. They were suppose to run labs on that this morning but somehow the order for it didn’t get placed and so now we have to wait for a new order. This is all so stressful because it is so hard to get and IV in him and so we need to know what his levels are so that if he needs another transfusion a line can be placed during the day because there is no one here at night that can usually get a line in. We have been through this scenario twice now so it is very frustrating that we have to explain and possibly go through it again.
Other than that he is still doing good, he ends his antibiotics tonight and then feeds start again tomorrow so wish him luck in digesting everything the way he is suppose to. Thank you all for your prayers, please keep Tristan in them as he starts this new process ~Christy
Tuesday, June 01, 2010, 11:33:07 PM | email@example.com (Sean Molby)
|Good news today, well kind of. They pulled Tristan off of isolation early!! We have a new rotation of resident doctors and they felt that with all of his labs coming back clear he no longer needs to be in isolation. There is still a chance that one of his labs could come back positive for a viral infection (this is the one that has kept him in isolation) but after 5 days it is still negative and the doctors think it will remain so even after the final check on Saturday so they figured there was little risk to Tristan or other patients. This doesn’t really change too much but it is one less stressor. He also pooped last night for the first time since last Monday, this is a good sign and shows that there is most likely no damage to his intestines from the NEC, we won’t know for sure though until he starts his feeds. They are going to take him down tomorrow morning to hopefully place a new PICC line, this is just a precaution since his first blood lab was positive, if they can not find a place to put it they will just keep his original line and continue checking labs.
He finishes his antibiotics on Thursday night and they WILL start his feeds on Friday-YEAH!!!!- but very slowly. Only 5 ml an hour, if he handles this well they will increase gradually and when he gets up to his needed amount, about 22 ml per hour and shows that he can digest it properly they will then go ahead with his GI surgery to insert his GI feeding tube. They decided against doing another swallow study until the 3 months are up.
Other than that no changes, he is still being so good throughout all of this and smiles quite often. We are hoping for a release date in about 3 weeks, and he will finally come home for the first time! J ~Christy
Monday, May 31, 2010, 11:51:42 PM | firstname.lastname@example.org (Sean Molby)
|Well Tristan’s hemoglobin dropped this morning to 11.0 so they had to give him another blood transfusion. That makes 6 so far. Other than that not much has changed. He is awake most of the day and in a happy mood and then he generally sleeps through most of the night, thankfully his schedule is not the other way around. Only 3 more days and he will be off of his antibiotics and gut rest, so he should start getting some food on Friday! Yippee!!!
Hope everyone enjoyed their extra time with their loved ones this holiday weekend. We spent some extra time with the girls ourselves, without them having to be at the hospital. It was hard being away from Tristan but I think Briah and Ella enjoyed just hanging out at home with us for a change. Sweet dreams to all out there who read this tonight, otherwise I hope anyone who reads this in the morning has a wonderful Tuesday day! J ~Christy
Sunday, May 30, 2010, 9:17:35 PM | email@example.com (Sean Molby)
|Not much exciting news today, pretty much the same as yesterday. Tristan is progressing well with his anitbotic treatments, and we are just waiting……..and waiting…….to start feeding hime again. Please read the previous posts for more information. Thank You|
Saturday, May 29, 2010, 11:50:43 PM | firstname.lastname@example.org (Sean Molby)
|I know it has been a while and I am sorry but it has been really crazy here at the hospital and we have been up here most of the time and by the time we do get back to the house we are too exhausted to post anything. There have been quite a few changes since we last posted. Tristan was set to be released last Monday and then again this upcoming Monday but we have descovered he is not doing as well as he was. He was having what we thought was some minor complications that turned out to be very major. When they took the feeding tube out we thought he had been doing good but when we tried to switch him to unthickened breast milk he was not doing well and aspirating a lot so they did a swallow study to figure out why, it turns out that he is silently aspirating with every few swallows even with the thickener and so it was determined that it is not safe to feed him by mouth, meaning they need to put in a GI feeding tube, so another surgery. It was scheduled for today, however other newer complications have set it back.
He was having blood in his stools and they were monitoring those, thinking it might be some sort of allergy. They were getting progressively worse and despite my constant asking they were just planning to continue to monitor it. Thankfully a new attending doctor came on the floor and was reviewing Tristan’s case and he inquired why they had not contacted GI (the gut doctors) for his stools. Long story short GI was consulted they did a few tests and found that Tristan had developed NEC (necrotizing endocolitis). NEC is a bacterial infection found in the GI tract that after a period of time eats through the gut and deadens it making it useless, this if left untreated or not caught is fatal… if it is not caught early enough they have to do surgery to remove part of the small intestines-something that Tristan is not stable enough for. The treatment for this is a combination of antibiotics and gut rest, meaning nothing can be introduced into his stomach for 10-14 days, so basically they starve him. He is on TPNs and lipids for nutrition but he still feels the hunger. They do believe they caught it in time but it will take through the end of the course of antibiotics to know for sure. In addition to this the bacteria manage to seep through his intestinal walls and infect his blood, which for him is dangerous since that blood is then pumped to his heart, they again believe that they started the antibiotics on time and that no damage has been done but they will have to wait till next week when they do another echocardiogram to know for sure.
As of know Tristan is in isolation, he can still have visitors but we have to be cautious that no new germs are introduced into Tristan’s body. He has been a trooper through all of this despite feeling hunger pains and all the sticks they do on him to take blood samples, he is still rarely fussy. The nurses up here love him to death and despite GI saying they thought he might benefit from going to the PICU for better monitoring, the 4th floor staff all agreed they wanted to keep him up stairs were he is at and have made some exceptions to keep him there. The nurses have been wonderful through all of this and very supportive. It has been scary but hopefully they did catch it in time and this is only a temporary set back.
They will restart Tristan’s feeds by NG tube on June 4th or 5th but they will go very slowly and with a very basic elemental formula. Then after he has showed signs of being able to digest that properly and no new bacteria is found they will then discuss doing the GI surgery for a G-tube for feeding. This will be 3-4 weeks away.
Please keep Tristan in your prayers as he is in need of them again. Thank you all for your support~Christy
The number to his room is 816 460 1044 extension 4713. Just call before you come up and please make sure you or anyone with you has NO symptoms of illness at all. It is very important Tristan not be subjected to any viruses or bacterial infections that could set him back.
Saturday, May 29, 2010, 11:50:20 PM | email@example.com (Sean Molby)
|Since we have had complaints on our lack of keeping up with updates I will make a quick post! J (no, seriously it means a lot to know that everyone is always thinking of Tristan and wanting to know how he is doing. Again I apologize for us not keeping everything updated the way we should).Anyways, there really are not any new changes. He will be in isolation until June 6th but he should start getting food again on either June 3rd or 4th. He has been such a good boy throughout all of this. All of his blood cultures but the first has come back negative so that is awesome news; because of this they are not going to do any more cultures daily. This will help a lot in getting his hemoglobin levels back up. As of today they are 12.2 down from 12.9 Thursday but they are taking the maximum of blood out of him daily so that is actually not such a bad number but his ideal numbers should be above 14. They are hoping he is finally starting to rebuild his own levels naturally, so for now they are holding off on another transfusion-he has had 5 to date. They will still have to draw blood for his labs but they don’t need to pull as much for those as they did the cultures.
He gets daily x-rays now instead of the 2x a day he was getting and they also have all come back looking good. Each x-ray seems to look better than the one before it. So for now he is doing good, only a little fussy every know and then but hey if I had a huge tube coming out of my nose (this is a suction and it decompresses his stomach and keeps anything from going through to his gut), a PICC line taking up an entire vein (a double IV for his meds, some blood draws, lipids, and TPN’s), wires coming out of my chest(checking his vitals-heart rate and respiratory rate), and another monitor on my foot (testing is oxygen saturation levels) I would be a colossal B!%@# !!!! J (edited for the younger ones) but he still stays in good moods and smiles quite often, such a sport!
That pretty much covers it. Hope everyone has a fun holiday weekend. Please enjoy your time with your kids and family it is more precious than you could ever imagine!!! ~Christy
Tuesday, May 18, 2010, 11:32:43 PM | firstname.lastname@example.org (Sean Molby)
|Sorry we have not posted in a while. Sean has been super busy with the move and I have barely had time to breathe with taking care of Ella and Tristan- I am now in charge of his day to day care with assistance from the nurses only when needed- and then also dealing with all the appointments, meetings, and trainings daily.Tristan is doing a little better. He has had a few set backs but seems to bounce back fairly well. Today’s setback was he woke up with a fever around 8 am and so they had to run a series of tests to check for infection. So far everything has come back okay but it takes up to two days for the blood culture to show anything so we won’t know for sure until later tomorrow. After they gave him Tylenol once, his fever has not come back so hopefully it was just an environmental cause; like he was just too warmly bundled up. He also has had blood in his stools the last couple of days and we have not figured the cause of that. There are several reasons he could have that so right now they are just monitoring him.
They took his feeding tube out yesterday morning, not that he was ready for it. They just wanted to see how he would do and if maybe he would start eating more on his own without it. So far it has worked. He went from taking 15-20 ml on Friday each feed and then the rest by tube to taking 40-50 ml with each feeding on his own. He has to drink at least 40 ml each feed to stay hydrated and they are going to give him another day to up is intake to at least 50 ml each feed before they place the NG tube (feeding tube) back in because we need to make sure he is gaining weight. He has to have significant weight gain to be ready for his next surgery here in a few months.
It has been stressful but we are making it through. Tristan can definitely still use your prayers to help him over this next hurdle so that we can bring him home.
For those that are interested he can have visitors now so please feel free to come up and say hi. The number to his room is 816 460 1044 extension 4713. Just call before you come up and please make sure you or anyone with you has NO symptoms of illness at all. It is very important Tristan not be subjected to any viruses or bacterial infections that could set him back. Thanks to you all! Christy
Wednesday, May 12, 2010, 1:19:10 PM | email@example.com (Sean Molby)
|Well last night was not the best night we have had. I managed to scare off several nurses and the resident doctor…she was a first year so it wasn’t too hard to intimidate her I guess. So you know what I am talking about, I will explain. Tristan had a scary set back yesterday; he had a difficult time recovering from the cath procedure that was done. His O2 levels were continuously low averaging between 50’s and low 60’s. It is dangerous for him to be lower than 70 and he has averaged around 85 since his first procedure so these low saturation levels were rather alarming.
As Sean mentioned before they tried to take two samples of blood, after he returned to his room from recovery, to test his hemoglobin levels and both clotted. This was after they blew 6 veins trying to get his IV in for the catheterization, so for me that was enough. I was done with them poking my baby boy and messing up. So I said no more they could wait awhile or just have the ICU put an IV in since it was fairly apparent that he was going to need a transfusion. As this isn’t “protocol” the resident doctor tried arguing with me about it, I gave in saying they had one try to get an IV in then they needed to call a NICU nurse, she wasn’t happy but agreed. While waiting for the charge nurses to come and make an attempt, Tristan for some reason did not do well with his feed and threw it up, in the process gagging and aspirating nearly choking himself to death…and I mean that literally. He stopped breathing and they had to call in several nurses and then suction everything out of his nose and mouth, as they can not do the Heimlich, it was very scary and stressful. This happened once more by the time they came to try an IV line so needless to say I was a stressed out wreck and not a very happy camper, not to mention exhausted as it was around 1 AM and I only got about 3 hours of sleep Monday night as I was restless thinking about the cath procedure. So when they tried, they failed, they blew another vein…they were told to leave (by me) J! Then the NICU nurses came up and tried to place an IV line in his head to no avail, another blown vein. If you haven’t guessed by now I am fairly… well, pissed off is the most polite term I can use.
So that makes 8 blown veins, on top of his cath procedure that was done, where they had trouble in the end with stopping the bleeding, consistently low O2 saturation levels making him have to go on oxygen support, plus the vomiting, all on top of him missing four feeds this morning so he was somewhat weak plus lethargic from the sedation, and then they were doing assessments every hour. Poor Tristan was just exhausted and so I put my foot down and said to go to the end of the chain of so called “protocol” and call in anesthesia to do the IV, I was finished with people blowing his veins and screwing up the blood draws, I was not quite as nice saying that as I am now. By this time I had scared the resident off and so she wouldn’t come to the room to talk to me but she did call, and we argued about the “hospital protocol” while she was trying to say that the next step was the transport team and that she had already called them to try to run an IV. I was rather perturb, said no and insisted on anesthesia doing it. Well in the meantime transport was available and had come to the room and while talking with them, our night nurse, and while on the phone with the resident, transport assured me they were only going to look and if they didn’t think they could get a line in they would call anesthesia themselves as the lead transport team member had a child of her own and knew exactly what I felt (finally someone with and actual child of her own who understood)! I agreed as I actually felt comfortable with this person. It took almost an hour of searching but she found one vein she thought she might be able to use as all of his other veins were useless because of the blood draws and blown veins. She asked my permission and so I told her she had one try but then I was done. We all said a prayer laid Tristan’s blessing blanket over him and hoped for the best. Thank God she got it with no problem what so ever and Tristan didn’t even cry and sat still through the whole thing.
Things started to go very smoothly after that, he finally got his transfusion and has managed to keep all of his feeds in so far. I refused the PO (oral) feedings yesterday as I didn’t want to exhaust him and I refused them today as well, he has been through so much I just want him to have a day of rest without having to do any work at all, he definitely deserves that!
Since the transfusion his O2 stats have been in the upper 70’s lower 80’s so perfect for him and he is nice and pink again and has been happy and comfortable most of the morning.
I, however, am exhausted as I didn’t get to sleep this morn until after 3 AM and it was in an uncomfortable chair as Sean slept on the bed/couch with Ella in Tristan’s room since we were not comfortable leaving him. Let me say 7 hours of sleep in two days is NOT enough!! J
Thanks again everyone for keeping Tristan in your thoughts and prayers. I ask or rather beg that you continue to do so as this has set him back and it will probably be another week or so before he is released to come home instead of this weekend like we had hoped. Then we get to have him home for only a couple more months until we come back up for his second surgery which, for him, is his most dangerous.
Tuesday, May 11, 2010, 9:34:17 PM | firstname.lastname@example.org (Sean Molby)
|Tristan has had a long day, he had a procedure done called a Heart Catheterization, this process is completed thru the veins, and is used to equalize the pressures between both sides of his heart, thus improving blood flow and o2 saturation levels. They were having trouble finding a good location for his I.V. this morning, and the little guy was stuck six times. The procedure went relatively well, the doctor showed us pictures, actually video clips of his heart working and before and after the Catheterization. This was really cool, technology is really something. He was also able to confirm the correct flow of blood to his lungs, and the stent that was installed with the hybrid procedure. So all is good there, when we were finally able to see him post surgery, his color was pale and he did not look good. Before surgery he was a nice pink color, the way a baby should look (this is uncommon for a hybrid baby), and after surgery a pale white/blue color. For mom and I this was cause for alarm. Through out the course of the day Tristan’s oxygen have been consistently low, his color has slightly improved from this morning, and they are concerned that his hemoglobin levels could be low. Apparently during recovery, he lost some blood and there is a concern that this could be affecting his Hg levels. So back to the needle, the first vile that was pulled sat on the counter too long and clotted, Tristan does not like needles, this stresses him out and in turn stresses myself and mommy out. The second vile that was pulled was hand carried down to the lab, handed over and guess what; IT CLOTTED. So right now we are discussing whether to let them pull it again or go for an I.V. access, that way Tristan won’t have to keep getting stuck. If his Hg levels are low he will have to get an I.V. anyway for a blood transfusion. Thank you all for praying for Tristan, we have people all over the world praying and I have to believe that its working, Their have been several nurses that have commented ” we have got the wrong baby, he had a HYBRID?” Basing their statement on his color. So please continue praying for little Tristan Drake Molby, hopefully we will be able to come home soon, to be continued……|
Tuesday, May 11, 2010, 7:18:20 AM | email@example.com (Sean Molby)
|Tristan has another surgery this morning, please send out a quick prayer for him. I will update everyone after the precedure. thanks|
Sunday, May 09, 2010, 7:49:42 PM | firstname.lastname@example.org (Sean Molby)
|Tristan has been moved up the “floor”, and is doing relatively well, they have been working on his feeds since May 3rd, gradually increasing the amount
and the rate, trying to supplement with a bottle when possible, apparently
teaching a new born how to suck again is a long process, they tend to forget after
several weeks of not eating. He has been taken off of his monitors when we are in
the room, and this is really nice as we are able to hold him with out a bunch of
Today is Sunday May 9th, Mothers Day so please enjoy the day with your
moms and little ones if possible.
Also on a side note, for those of you that don’t know we will be moving
throughout this whole process on Saturday May 15th form Lawrence to Lees
Summit, and we could use a lot of help, if you would be willing to donate some of
your time, please let me know (email@example.com) Thank You and please keep
Tristan in your prayers.
Sean & Christy Molby
Monday, May 03, 2010, 9:47:51 PM | firstname.lastname@example.org (Sean Molby)
|Well I never thought the sound of a baby cry could be so sweet! Tristan cried for the first time in three weeks on Saturday 🙂 My apologies for the delay in updating these posts, we have had an eventful weekend to say the least, and have just been emotionally and physically drained. So to catch everybody up: on Friday they attempted to wean him off of the ventilator, however as much as Tristan does not like that tube down his throat, he was having problems with this. He was having problems maintaining his O2 saturation levels. They tried this multiple times throughout the day and finally succeeded early Saturday morning. So on Saturday he was breathing on his own, and weaning down his dopamine medication eventually coming off of this and starting captopril, this is a heart med that he will be able to continue at home. During all of this we had a big scare, Tristan’s heart rate dropped very low several times during a period of about 15 minutes, these heart arrhythmia’s are very alarming, and can be fatal. With no explanation as to why these were happening, Tristan was hooked up to an EKG machine for monitoring the rest of the day… and this has not happened since. The good news is that he was able to maintain his profusion throughout this time, and because of this the doctors were concerned but not alarmed. He is still doing fine in this department.
Also on Saturday, the nurses tried six times to properly insert a feeding tube into his small intestines, each time they had to take an x-ray to confirm the placement. Poor little guy had six x-rays in one day, and by late evening they achieved success!!!! Or so they thought, today an upper G.I. test was preformed to determine if there would be any problems introducing milk into his stomach, and found the tube only ¼ of the way inserted into his small intestines. This is somewhat good news because he did not have any problems with this or filling his diaper. So that may have sped things up a bit. Sunday was a good day for Tristan, upon arrival at the PICU, Christy’s favorite nurse Brecklyn (from the NICU upstairs) was watching over him, and this made all very happy. It’s amazing how the little things in life bring you peace, anyway Tristan had a good day, mostly uneventful, weaning down his medications, and sleeping a lot.
Monday was more of the same, they removed his drainage tube, all of the staples where his incision was made where removed as he is healing beautifully (this is normally a 10 day process), and his arterial line and his picc line were also removed. Tristan’s feeds have been continuously increasing and are up to 12ml/hr, and soon he should be off of these maintenance doses and receiving bolus feedings, this is progress in the right direction.
I am hopeful that he will be moved up to “the floor” by mid-week and out of the PICU. Tonight is a big night for us, Tristan got his big boy bed, he is now in his own crib, and both mom and I have been able to hold him with out 90 million hoses and lines getting in the way and without any bedding or blankets hindering our ability to feel him in our arms. Tonight was the first time since April 10th that we really got to hold our baby boy! We even got to put him back in his bed-no nurse help needed J He is making good progress compared to all of the drama that happened on Friday and Saturday, but he still has a long way to go before being sent home. Please continue to keep Tristan Drake Molby in your prayers, as this is only the beginning of his journey.
~Sean and Christy Molby
Sunday, May 02, 2010, 10:41:50 AM | email@example.com (Sean Molby)
|We had some compications yesterday, we are still working thru them. We will post a more detailed update when we have more time. Please keep him in your prayers|
Friday, April 30, 2010, 3:54:58 PM | firstname.lastname@example.org (Sean Molby)
|It has been a slower day today, the only big news is he is off his lasix drip and is now just getting one single dose a day. This is good and was expected since his swelling is now mostly gone and his urine output has now exceeded his extra fluid input. (Meaning he has peed out more than the extra fluid they had put in). They have tried a couple of times to switch him to the automated settings on his ventilator, this is the last step before taking the breathing tube completely out. However, his breathing rate was not as high as they wanted it, so both times they have had to switch it back. But they did say that all the other stats on the ventilator were awesome so it is not necessarily a bad sign they just think he still has some of the sedation meds to wear off. (It also doesn’t really help that the respiratory therapist switched him to auto mode right after the two times they had just given him some versed (a sedation med)….I know logic would have pointed to her that he probably would have responded better if she had waited or possible switched it off BEFORE he was sedated. But alas
I am only a mom so what do I know? J)
Since, they are still trying to get him off the vent they have put off feeding him for another day L because they need to make sure that he will not regress when they pull the vent out completely –if he was to regress it could cause some complications if he did not have an empty stomach. They did tell me once they pull it out if there are no complications he will get his first feeding after 4 hours of no vent, so he could still possibly get some food tonight but we will be okay if he waits till the morning. The important thing is for him to be okay and ready for each step they take.
They did pull out his catheter (OUCH!!!) but he was a trooper and only cried for a few seconds and then was fine so they didn’t have to give him any extra pain meds to calm him down afterwards and they were surprised because they often times need to do that. And he peed right after it was pulled for what seemed like forever so all is still working well down there! ~Christy
Thursday, April 29, 2010, 11:42:00 PM | email@example.com (Sean Molby)
|Today overall has been a good day for Tristan. He has finally peed out all of his excess fluid. He has been awake and coherent quite a bit today and is in good spirits as he has smiled a lot. For everything he has been through he is such a happy baby; and that is not just me as a mom thinking that, even the nurses comment how much better he is than other babies with his condition. He is just very even tempered and generally content….except when he is poopy, then it is like all hell has broken loose! Grandma always says how funny that is since you would think he would be more pissed at all the tubes and wires coming out from all over his body!They have taken him off all his pain meds in the continual drips (so the versed and fentanyl are both gone) and now he only is getting them as needed. So far he hasn’t needed anything since 9 PM but they will give him a PRN dose (that means as needed) later tonight to make sure he is comfortable through the night. So sweet dreams for Tristan! J
Right now he is talking with Daddy and smiling and wiggling all around. It is a wonderful sight to see.
He is pretty much breathing over his ventilator so he is very ready to get it taken out and with as well as he is doing that will hopefully happen tomorrow sometime…fingers crossed! Keep all the prayers coming, you are all amazing and we so much appreciate the support you have given. ~Christy
Thursday, April 29, 2010, 5:25:19 PM | firstname.lastname@example.org (Sean Molby)
|Well I came in today to a big shock, but it turned out to be a good one. It seems they had one of the patients get really sick and they needed an isolation room and it turned out that Tristan was the only one in an isolation room that was stable enough to move. So we are now sharing a room with another little boy which stinks cause there is not very much privacy but it is good because Tristan is doing good enough for them to justify that…. But I now miss my private bathroom! Oh well, I will definitely take a recovering baby over a private place to pee. JTristan is doing really good today. He is completely off his fentanyl (sedation/pain medicine) and they are weaning him slowly off the versed (another sedation medicine) and he should be completely off that by tomorrow. Then they will just give him pain meds as needed. After he is all off the sedation meds they will remove his catheter. He also pooped for the first time since right before surgery, another good sign as it shows his body is starting to function normally again.
They are slowly lowering his ventilator usage and even sedated he is breathing over the vent and on his own-good sign!!! He should be off of the ventilator within 24 – 48 hours and then they will also remove the NG tube (the one in his nose) but then they will replace that with a feeding tube. They decided against starting feeding him today, it was felt it would be better if he waited till tomorrow. L
His swelling is very minimal now; he is just a little puffy but he looks like a cute little baby again, as compared to an inflated balloon! J He woke up again when I got here which was really exciting! Especially since he seemed very alert and his eyes were not cloudy and unfocused like they were yesterday. He even smiled a little as I was talking to him. He was only awake for a little over a half hour but it was good to be able to look into his eyes and see him looking back!
Grandma came up for a visit while he was awake so she was excited about that. Aunt Teresa also came up to see him today as well as a friend we met while living at the Ronald McDonald house. So overall, it was a busy day for Tristan with lots of visitors.
Thursday, April 29, 2010, 6:29:36 AM | email@example.com (Sean Molby)
|Real quick apology, this was suppose to have been posted last night before we left Tristan’s bedside to head to bed ourselves. Tristan is doing really well. He is completely off the epinephrine and peeing like a champ. He still has quite a bit of fluid he needs to ex-spell but for now his urine output is awesome and he is right were he should be…. Never thought you would be excited to read a post about a baby peeing did you! J
The most awesome part of the day was he opened his eyes. He was awake and breathing on his own starting at around 3:30pm and stayed awake for about a half hour. They hadn’t really expected him to be as alert as he was for as long as he was. It tuckered him out pretty fast though and although he opened his eyes a few more times throughout the day he was not awake for long. But as he is still on fairly high doses of pain meds this is expected and normal.
His swelling in his face has gone down quite a bit but his abdominal area still looks puffy and really shiny (from being so stretched out). They said they may start feeding him milk tomorrow morning, this will be his first real food since April 10 at 11pm. He will only get like a teaspoon at a time and it will be through a feeding tube but hopefully he will tolerate it well. It is just one step closer to him getting the drainage tube out of his chest and then off the ventilator.
Big sis got to come up for a visit, she was kind of sad that Tristan didn’t open his eyes while she was there but to kind of make up for it his nurse let her rub some lotion on his little legs since she (Briah) said she thought they looked dry.
Not sure when another post will get up, probably not till tomorrow evening cause Sean goes back to work tomorrow and with him the knowledge of how to actually log on to this website. My brain is still not functioning enough to compute that info yet. Also for those that are not as web savvy as some (me included) just note that under some of the posts there are links to more pictures. And we, or rather Sean, is trying to figure out how to put some sort of a message board up so you all can post comments and such since not everyone has face book but we are still not sure if this particular web set up will allow that. Thank you all for your wonderful prayers and let us hope for a big “Welcome Home Tristan” party at least by the end of May~ maybe sooner!!! ~Christy
Wednesday, April 28, 2010, 12:45:31 PM | firstname.lastname@example.org (Sean Molby)
|Again, we can not thank everyone enough for all the thoughts and prayers you are sending Tristan’s way. We came in this morning to great news! The prayers have worked and Tristan has started peeing, YIPEE!!!! J It is funny how little things that we do everyday without thought make such a difference to him. So with this new development, they have now lowered Tristan back to the lowest dose of epinephrine, have stopped giving him extra fluids, and lowered his ventilator settings as well. They went down on the fentanyl (this is the sedation medicine), and they were able to start him on lasix to help reduce the swelling. The new goal for today is to wean him completely off the epinephrine and get his swelling down so that the pressure, from the extra weight of the fluid, will be relieved and it will then make it easier for him to breathe on his own. They can then start to wean him off the ventilator. That will be a slower process but we are hoping by weeks end he will be awake and breathing on his own.
He will also get a visit from his big sister tonight who has anxiously waited for him to be stable enough to come see him. Briahnna has only gotten to see him once since he has been here, the Sunday before surgery, so this is a big day for Tristan all around! ~Christy
Wednesday, April 28, 2010, 12:03:54 AM | email@example.com (Sean Molby)
|Well I’m going to start with….”It’s been a really long day”, Tristan’s blood pressure has needed constant monitoring, and is finally starting to show signs of improvement J While the doctors have not been concerned, it’s been really stressful for both Christy and I. The first 48hrs post op is “the critical period”, so we have been patiently waiting… …..and since they keep him sedated during this period there is not a whole lot to write about. Today they administered a blood transfusion to keep his hemoglobin levels topped off and they also gave him a cortisone treatment as explained in the previous post. During this whole recovery period they have been continually giving him “fluid” (albumin) and epinephrine to keep his blood pressure up while his body recovers from surgery. Right now the sign we are waiting for is for him to begin the process of eliminating all the extra fluids they have been administering so that the swelling will start to go down. So basically at some point he will pee. Yes we are waiting for Tristan to PEE!! This will tell us that his body is adjusting, and they can start using Lasix to help him pull out the excess fluid, that has been keeping his blood pressure stable. So pray for pee!!!!! J love you all. ~Sean & Christy Molby|
Tuesday, April 27, 2010, 8:23:25 PM | firstname.lastname@example.org (Sean Molby)
|So this is the first time I am posting as Sean has been the amazing husband and done all the things the last 2 weeks that I just have not been capable of dealing with. But it seems even he has his limits and the lack of sleep, the stress of having to return back to work instead of being here with Tristan, and surgery today is finally catching up with him and unlike me he does not have medicinal help to get him through the nights (and just to assure you all I have not turned into a new druggie J but I have no shame in saying “thank GOD for pain meds” cause without them sleep would be an impossibility). Also, before I get started I want to thank everyone for their thoughts and prayers, and all the help we have received. The support our family and friends have shown has been much needed, appreciated, and greatly admired! You have all been wonderful and I truly believe Tristan is now doing as well as he is thanks to you all! He knows you are all out there cheering him on! PLEASE keep it coming.Well, we are nearly 12 hours post op and so far Tristan is right were he should be. He does have slightly low blood pressure but they have assured us, thoroughly at my constant asking, that for the procedure he went through that it is expected and they have increased his fluids and are giving him a minimal dose of epinephrine to help raise it. Again this is considered a normal practice for his type of recovery. All his other stats are in good range. Heart rate, respiratory rate, and oxygen saturations are close to perfect and they have even taken him off the nitrogen and all is going good with that as well. His blood gases have all come back in the normal range and he is recovering peacefully and so far without complications. Overall, Sean and I could not have asked for a better anniversary gift (for those that don’t know today was our 14th
Wedding Anniversary-a bit stressful but I have no complaints, he has even promised a yogurt from the cafeteria before nights end J)
We will probably be up here for at least a couple more hours or more before heading back to the RM house to catch a few hours of rest. So we will try to update again before leaving and then again mid afternoon tomorrow. I know a lot of you wait anxiously to have the next bit of news…… I am here and know what is going on and I can’t wait to see what Sean has posted next so I understand how important the updates are.
Please continue to keep Tristan in your prayers as he still has a long road ahead. They consider him severely critical until at least 24 to 48 hours post op, so until he makes it through the next couple of days it will be very stressful and nerve racking.
For anyone wishing to come up and see him you are more than welcome. I am always within 5+ minutes of getting to him and either Sean or I have to be here for the majority of visitors. All we ask is that you don’t come if you have any symptoms of illness at all and that you leave the little ones at home as they are not allowed in the PICU or the NICU. If Sean is up here as well we asked that visits with Tristan don’t last more than 10 or 15 minutes as that takes us away from him since only 2 people are allowed in at a time. Thanks again everyone for everything! We appreciate all you have done and continue to do! ~Christy Molby
Tuesday, April 27, 2010, 4:29:55 PM | email@example.com (Sean Molby)
|Eyerything is pretty much the same, still having blood pressure issues, but they are slowly getting progressivly better as the day goes on. We keep updating the post op hours, because after the 48 hour period thing should start trending for the better. They just administered some hydrocortizone and the nurse is confident that this will help stabilize his stress hormone levels, and help with keeping his blood pressure up. check back later…….|
Tuesday, April 27, 2010, 3:42:21 AM | firstname.lastname@example.org (Sean Molby)
|We are saying goodnight to Tristan, heading back to the RM house to try and get a little rest so we can be there for him tomorrow……. well actually today. He is still doing good, all of his stats are where they should be. He is still having a little trouble with low blood pressure but the doctor said he isn’t concerned…not as easy for us to think that way but we have been blessed with a multitude of talented surgeons, doctors, nurses, and others that have gotten him through this far so we try to accept what they say. Say a prayer for him before you head off to start your day, they seem to be working! Thank you all! ~Christy|