Feb 27, 2009

Chillin' in the Crib

Davis had a visit from his Great- Grandparents again today, and his Great- Grandmother Ovid finally got to hold him. He didn't want to wake up for her, but we're still so glad she could spend some time with him. She loves babies (Davis is her eighth great-grandchild) and we think she really enjoyed it :)

He also moved from an isolette to a crib today, which he seems to really like. There's more to look at in the crib, so he doesn't get bored. Nurse Shanda saved a super cool mobile just for him, and he absolutely LOVES it. It is very colorful and funky. We left him some photos of us taped to the side of his crib, and he likes to look at those too- funny enough, he seems to like the photo of all three of us (taken when he was just a few days old) most of all. 

Eating continues to be a challenge, as is reflux. Davis is on Zantac to help with some of the reflux symptoms, but he does still cough, gag, and occasionally throw up. Fun fact: the fancy hospital term for throw up is "emesis"- sounds much nicer, huh? When it comes to bottle feeding, he will sometimes take as much as 15 cc's or so, but those instances are relatively rare. More often, he'll get confused as to where to put his tongue, or he'll get a good latch and then get scared when milk comes out. Sometimes he won't try at all. Working with the bottle seems to wear him out pretty quickly. If anybody out there has any feeding tips or tricks, we'd sure love to hear them.

The Big Move

This afternoon Davis moved from the ICN, where he has lived since he was born, to the Transitional Care Nursery (TCN). We are one huge step closer to being home and so excited. One of the first things he did once he got there was have a bath... you can see what he thought about it. 

Some of you may know this, but the survival rate for CDH is 50%. We look at Davis and feel such overwhelming gratitude that he is here with us, breathing on his own and continuing to do well. So many families- those dealing with CDH and otherwise- are not so lucky. Tonight, our hearts are broken. Joseph, a beautiful CDH baby boy, passed away after 23 days on this earth. Please pray for his parents, Sky and Carla, that they might find peace. 

Feb 25, 2009

very superstitious

Today Nurse Lindsay told us that Davis is next on the list to go to the Transitional Care Nursery (TCN). This is great news! The TCN is for babies who are working on feeding & growing- in other words, healthier kids who are on their way HOME!!!! He'd be there now if they had enough space for him. We toured the TCN today and it seemed more peaceful & quiet than the NICU. His nurses can follow him there, which is really important to us. Davis has amazing nurses. Even though I really want to take Davis home, when I think of leaving Jennie, Yvette, Shanda, Lindsay, & all his other primaries, I get a little choked up. These ladies literally saved his life, and they did it with so much skill, love, and compassion that I feel like we could never thank them enough. 

The big issue keeping us in the hospital is feeding. Davis eats through an NG tube that goes through his nose all the way down to his stomach. We're working on encouraging him to try eating by mouth... so far, it's slow going. The nurses say that one day a light bulb will go off, and all of a sudden he'll just get the hang of it. We sure hope so! He did take 16 cc's from a bottle today... it's a start.

We've started making predictions on when we'll be home. I would have never let myself do this even a week ago. There's a certain kind of superstition that I think is common to parents who have NICU babies. It manifests in lots of little ways, and I think the doctors and nurses feel it too. For example, for weeks I never wanted anyone to even say the word ECMO around Davis. If he was having a good night, the doctors would tell us his success in half whispers, always followed by "but don't tell him that" or something similar. We would never ask questions that started in "how long" or "when", partly because we didn't want to get our hopes up and partly because we were scared to jinx him. Maybe it was lack of sleep, but I would try to read almost anything as some sort of sign of what the future held for our sweet little son. Sound crazy? 

Then, the other day, it occurred to me (finally) that maybe I can stop holding my breath. We really are going to take Davis home, and that day is probably sooner than I realize. Even though he's been doing fantastically well for a little while now, it's only very recently that I've let myself believe he's out of the woods. That being said, Michael is predicting we'll be home in a few weeks. I'm going out on a limb here (NICU superstition be damned!), but I think he may be right. 

Even if it takes a little longer, we are so lucky. Davis is way ahead of the curve comparative to other CDH cases- we count our blessings every day. 

Feb 23, 2009

Bath Time

Tonight, Nurse Yvette had us give Davis a bath. It was so nice to see him without ANY tubes or wires, if only for a moment. This was his first bath and though he didn't really enjoy it as it was happening, afterward he felt great! When we came in today, the IV tower was gone, meaning they had pulled out his UVC which was an umbilical access for his meds that had been in WAY TOO LONG. It was at risk for infection, but there was no other way to deliver his meds (barring an operation to install the broviac). We have been working on bottle feeds for a few days now, and since Davis was intubated for so long he does not want anything in his mouth. He will try a little and sometimes he likes the pacifier, so he feeds through a tube that goes into his nose and down to his stomach called an NG tube. Now that he can tolerate food in his belly, all of his meds are administered through his NG tube, straight to his stomach. So, no more uvc in his belly button! That is how we were able to get some pictures with nothing on him! This was a blessed night and we are so thankful for all of your prayers.....

P.S. Davis smiled today.

Feb 19, 2009

Eating, day two

Today was Davis' second day eating, and he's still getting the hang of it. It takes patience because he gets confused, but we know he'll figure it out soon. For a brief period with Nurse Lindsay, he was excited about his paci- a great sign! Still not sure about surgery tomorrow- it will depend on how feeds go tonight, and whether they're able to place a PIC line this evening. Our fingers are crossed!

First Meal

Davis had his first meal yesterday! He ate around 10 cc from a bottle and then went into a milk coma. We don't think he has an oral aversion, as some kids who have been intubated do, yet he still isn't quite sure what to do with a bottle. He gets a little confused and starts just sort of chewing on it after a while. He is now on a schedule to eat every 3 hours, and this morning they doubled the volume to 14 cc's each feed. We're still on pins and needles waiting to see how his intestines tolerate feeding. He hasn't pooped yet, but it could be that his intestines are just moving slowly because of surgery and morphine. 

Speaking of morphine, he's down to 30 mcg, and coming down by 10% every day. The phenobarb, a medication he started Tuesday, seems to be helping most of his withdrawal symptoms, yet he still has some... tremors, nasal flaring, fussiness, etc... 

If Davis makes great progress on feeds, we could possibly avoid another surgery to have a Broviac line inserted. He could have all his medications switched to be administered orally. Honestly, it's not likely that he'll make that much progress quickly enough. Our other option is to try again for a PIC line- maybe the 7th time is the charm?- so, as much as I hate to stick him again, they'll make another attempt on that today. He's on the surgery schedule for tomorrow in case the Broviac is needed. 

Feb 17, 2009

Kangaroo Care

Ever since Davis was born, we've seen signs all over the NICU to ask your nurse if your baby is ready for kangaroo care. Kangaroo care is when you hold your baby against your chest; it can help babies sleep better, help moms with milk supply, and in general make moms and babies happy. For the longest time, these signs would just kill us- especially when Davis was on minimal stimulation and we couldn't even touch him. We'd scrub in and go sit by his bed, wishing we could get some kangaroo time. Today, finally, we got to do it! Davis and I snuggled for a couple of hours, and Michael got to hold him too after the shift change break. I loved it :)

Davis is still doing really well, but he is struggling with a couple of issues. One of them is morphine withdrawal, as they've been coming down on his dose gradually. He's still on about 40 mcg- not a huge dose- but his body has become dependent. He started on phenobarb today to help with the withdrawal symptoms, which break my heart. He has tremors, a higher heart rate, and is generally fussy and uncomfortable. We heard him cry for the first time today. He's still hoarse from the breathing tube, so it was a little bitty pitiful cry, but he is definitely letting us know that he's uncomfortable. 

The next step for Davis is to start feeds. There are a couple of things holding him back from feeding right now. His "gut motility" (movement) is impaired by his recent surgery and the morphine he's been on as well as his abnormal anatomy. He still has a replogel, which is a tube down his throat that suctions bile and air from his stomach and intestines. This will stay in place until he can process things on his own. He may start feeds with an ND tube tomorrow, which is a tube that bypasses the stomach entirely. It all depends on how much his replogel outputs. He'll let us know when he's ready. He hates the replogel and is constantly trying to spit it out, so we'll be glad when he no longer needs it. 

He has another issue to work out, which is that all his nutrition and medication is delivered through a UVC line, which is like an IV that goes through his umbilical cord. The UVC is meant to be a temporary solution, mainly because the umbilical access should already be closed. He's already had the UVC longer than is ideal, which makes him at risk for infection. Most kids have a PIC line by this time, but the nurses have tried 5 or 6 times to place one and have been unsuccessful. Unless he tolerates feeds within the next few days, he'll have to have another surgery for a Broviac line so they can deliver medications and nutrition effectively. The Broviac line is a heart catheter that goes through a major artery. It is a surgery so it will mean temporary reintubation, general anesthesia, etc... not the optimal situation, but it may be the best solution until he can eat and take medication orally. 

Was that too much information? I didn't mean to write a novel here. As always, thank you for your love and support. It means so much to us both that so many people are thinking of and praying for our family. 

Feb 16, 2009

Look ma, no tube!

Yay! Today Davis was extubated! He no longer has a breathing tube and is breathing on his own. (The tube you can see in the first photo is not a breathing tube, but a replogel, which removes air, bile, etc. from his stomach until his intestines can process things on his own). His nitric oxide (minimal dose) is delivered through nasal cannulas. I have never seen the bottom half of his face until tonight, and Michael only saw it for a couple of minutes right after he was born. He is so freaking cute! 

The plan is to remove the replogel in the next few days, which is great, because he hates it and constantly tries to spit it out. Then we'll start feeds. His surgeon thinks he'll be eating cheeseburgers by the end of the week... not really, but we hope he continues to make the kind of progress he's shown so far. Feeding can be a big challenge for CDH kids (check out Carter's blog for proof of this), so we are constantly being told to have patience. 

We feel so lucky to have Davis. Tonight in the hallway outside the NICU a family was gathered, crying together. Everyday we feel so much gratitude for Davis' life and strength. 

Feb 14, 2009

Best Valentine's EVER

Today I got to hold my baby for hours. It was wonderful!!!! He was awake for the first hour or so and he was really alert, looking right into our eyes. He snoozed the rest of the time. I can't think of a better Valentine's gift. This has been the best Valentine's ever- Davis has added so much more love to our lives. 

He also got his first sponge bath today. Nurse Yvette (one of Davis' primary night nurses) decided it was time that Davis cleaned up a bit. He likes to stay up late and hang out with Yvette... she's teaching him how to talk like a New Yorker. 

Hopefully Michael will get to hold Davis tomorrow. Because he's got so many wires and tubes, etc, it's kindof an ordeal to move him from his isolette. Once you hold him, you have to hold him for a while (oh darn!), otherwise Michael definitely would have held him today. 

This has been such an amazing day....

Feb 13, 2009

post-op, day 1

Today, when we came in, Davis was off minimal stimulation! No more headphones, eye mask, or screen around his crib. He was just hanging out, being a normal baby, but still pretty zonked after surgery and all that anesthesia. 

He is doing amazingly well. The doctors prepared us for the fact that Davis might be sicker after surgery, but so far he's definitely proving them wrong. He is almost off nitric and on very low ventilator settings. Today, his doctor told us she would extubate him today if not for the morphine he's on for pain (morphine causes slowed breathing- as soon as he's off, he can breathe room air). She also said Davis has the most lung of any CDH baby she'd ever seen (!!!!!!), and this from a doctor who worked at a major CDH center in Florida. He continues to amaze us with his progress, and there's a possibility that we may get to hold him on Saturday. 

Davis is really, really strong. He no longer needs one nurse that attends only to him... now, he shares a nurse with another baby that will move into his room this evening. We love him so much and can't wait to take him home. That day seems closer and closer all the time...

Feb 12, 2009

out of surgery

Davis went to surgery around 11.30 this morning and the surgeon just came out to tell us he's done and that everything went well. The hole in the diaphragm was medium to large, so they did have to use a patch rather than just sew the diaphragm back together. The small intestine, large intestine, and spleen were all herniated. They did also have to perform a Ladd's procedure to rotate the intestines and sew them in place. We haven't been allowed to go back and see him yet. Dr. Rice said he felt the surgery went well, Davis' repair looked good, and he feels like he'll be all right with time. We'll update more later...

Feb 11, 2009

A Visit with the Great Grandparents

Davis' great-grandparents (Michael's grandparents) came to visit today. It was wonderful to see them and Davis did a great job staying stable for their visit. We're glad they came to see him today, because the nurses have told us that the next few days might be a little bumpy as Davis recovers from his surgery, which is scheduled for tomorrow around noon. 

We know that Davis has to have the repair, and that it's the beginning of his road to truly healing and eventually coming home. Still, it's scary. He holds my finger with his tiny little hand, and I realize how small he is and I'm afraid for him to have such a major procedure. He's been strong so far and we just pray that he'll do as well as he has so far. 

Some people have asked what the surgery involves. They'll make an incision below his ribs on the left side (where his diaphragm is herniated), and then move his intestines and stomach from his chest to his abdomen. Then, they'll repair the hole in his diaphragm. Depending on the size of the hole, they'll repair it either a) by stitching the diaphragm back together b) by using a muscle from elsewhere to patch it up c) by using a patch, like gortex or pig intestine. We're hoping the hole is small and won't need a patch, as that increases the risk of reherniation later and would be more prone to infection. 

When Davis gets out of surgery, we may be back to square one in terms of his stability. He may need to go back on the jet ventilator, go back up on his blood pressure meds, etc... we'll see, there's no way to tell until tomorrow. We love his team and feel strongly that they'll take the best care of him possible. 

a day of rest

Today was an uneventful day for Davis... we love those kind of days! He's just hanging out, getting rid of some excess fluid, and preparing for surgery on Thursday. He did have one episode where he desatted and had what nurse Shanda called a diva moment. She was worried and checked all his settings... turned out he just had a wet diaper. (thank goodness)

He's started doing this really cute thing when he gets upset. He'll wrinkle his brow and look more concerned than any two week old baby ever should. He's getting used to how to use his eyes. Last night, he looked around for hours... just blinking and kicking his little feet. It's so nice to see him more awake and alert. The tough part is, we never want to leave when he's awake and his eyes are open. We ended up staying at the hospital until 2 am last night- even though he was tired, he just wouldn't go to sleep. 

I know I say this on every post, but please keep thinking of & praying for Davis, especially on Thursday and in the days following his surgery. We really believe it makes a big difference. 

Mike & Carolyn

Feb 9, 2009

Surgery, the love frog, and a visit from grandma

Davis had a visit from Grandma Laura this evening. He had his eyes open for most of the day today. He's on morphine so he's pretty groggy, but it is still so nice to see his eyes. Today we looked at each other for a good long while. We both feel so much closer to him after looking into his eyes. 

Davis also got a new bedmate- the love frog! Elizabeth and Katie, his sweet little cousins, brought the love frog to keep him company. Thanks girls! Davis loves him. 

Davis is on the schedule to have surgery on Thursday. That could change- we're learning that everything, all the time, at any point is subject to change- but we're hopeful that he'll be ready then and that everything will go smoothly. He's doing so well and we're so proud of him- he just needs to keep it up for a few more days to show the docs that he's ready to have his repair. 

Go Davis!

Feb 8, 2009


We had an amazing day with Davis today. We saw him peek open his eyes (we got it on video, will post it later), we got to kiss him, and we gave him a mini-bath with warm towels. To get to touch him- even for a little bit- is the best, and we love when we get to see him without his earphones and shades. He's still on minimal stimulation, but every now and then the nurses will give him a break and let his eyes and ears get a rest from being covered all the time. We love him so much and, although we're maybe a little biased, we're pretty sure he is the most beautiful baby who has ever lived. 

Our little boy is making so much progress. He is so strong, it absolutely blows us away. He is completely off his epi (blood pressure meds) and coming way down on another medication. He is almost completely off nitric oxide, and all his numbers are looking great. We are cautiously very optimistic and so thankful for all the strides he's made so far. 

We've been reluctant to announce it for fear of jinxing it, but if things continue on this path we could be looking at surgery this week. Surgery has to happen to repair the hole in his diaphragm and to move all his "plumbing" to the right place, but of course it's a little scary to think about such a little boy having such an invasive procedure. We know he'll do great and that this will start him on the path towards feeding and breathing on his own, and then to going home. Please, please keep thinking of and praying for Davis this week. It's sure been working so far. We love you all!

-Mike & Carolyn

Feb 6, 2009

bye bye jet

Today was a big day for little Davis. The big news is he's off the jet ventilator! So far, he seems to be handling the change well. He's still weaning on the epi (blood pressure meds) and coming down on his PIP (pressure of ventilator), but the move to the conventional vent is huge. It is one big step forward to surgery. Our little boy is so strong. We are so proud of him. Even if he goes back on the jet for a bit, at least they know he can handle the conventional vent for at least a few hours... long enough to make his repair, if it comes to that. I held Davis' little hand today. The paralytic is wearing off, and I could feel him squeeze my finger the tiniest bit. I know I say this in every post, but we love him so much.

Davis met his grandfather Carnahan for the first time today. I think it was love at first sight (for one of them anyway- the one that can open his eyes). We are so glad that Dad is here... especially because he's a really good cook! Catherine and Karen left this afternoon and we miss them already. 

We are more grateful than ever to have Davis today. One of the little girls in his room passed away last night. She was very small and born extremely early, but fought hard for three weeks. It was a surprise to everyone because she seemed to be doing better. That was scary for us. She went very quickly, before her parents could make it back to the hospital. Our hearts hurt for their family and for the nurses, who I know are affected when things like this happen. Life is so precious. Please pray for this family to heal.


Play date!

Davis' friend Carter came to visit today. It was so wonderful to see him for a lot of reasons. His parents have been so supportive and kind to us, and it really gave us a lot of hope to see Carter doing well. Only a few months ago, he was where Davis is now. It was also good to see them because we got to hold Carter! It has been killing us that we can't hold Davis- so much so that Carolyn has been contemplating asking random women in the hospital nursery if she can hold their babies. Just kidding, but it was nice to get some baby time. We can't wait for the time when Carter and Davis can hang out and play and just be normal kids. 

It was a little frustrating today in the NICU. They're doing construction (which is really loud) and Davis had a lot of supports weaned. The most disconcerting thing is that they chose to do all of this weaning without one of his regular nurses present. We did voice our concerns and hopefully that won't happen again. Everything ma
y be different tomorro
w depending on how he tolerates changes over the night, but as of now his epi (blood pressure medicine) is the lowest it's ever been, his oxygen has been reduced, they took away the paralytic (which means he can finally move around), and they weaned the vent pressure slightly. It was a big day, and so far, so good. He still has a long way to go, but his progress is amazing. Every day, we get a little closer to surgery. 

Nurse Lauren signed up to be one of Davis' primaries tonight. She took care of Carter, and we are so glad that she is on Davis' team. All of his primaries are wonderful. They really know Davis better than the doctors, and are his constant advocates. We
 are so grateful to have them. 

Today, we were talking about the hidden blessings in our situ
ation. One big one is all the love and support we've gotten. Difficult times can really bring out the best in people. Because we have Davis, each other, and the support of our families and friends, we truly feel like the luckiest people alive. Thank you.

-Mike & Carolyn

Feb 5, 2009

Sawing some zzzz's

This morning when I called to check on Davis, his oxygen was weaned down to 50%! I know that there is more weaning planned for later on today, so we are bracing ourselves. Davis doesn't like a lot of rapid changes, and while we know he'll be okay after some time, weaning lots of things at once has made things a little rocky in the past. 

And now for the real news: last night, I was hanging out with Davis, and I heard a kindof soft little grunting noise. I couldn't figure out where it was coming from, and then it hit me: it was Davis. Davis SNORES! All of you who know Michael are probably getting a big chuckle out of this right now... I sure did. 

Will update more this evening. Keep praying, we love you all.

Feb 4, 2009

Go Davis!

This is a (blurry) picture of Davis' new bed mate. Catherine and Karen brought Puff the Magic Dragon to watch over our little one. Puff was my favorite as a little girl, and so far the magic seems to be working.

Davis' x-rays continue to look better and better. His good lung looks GREAT, and the other is getting larger and stronger every day. In fact, it's starting to move the intestines out of the way as it inflates! The radiologist who read his x-ray from this morning hadn't seen Davis before, and he had to ask what was wrong with him. When Lakshmi told him Davis was CDH, the radiologist was surprised. He said it must be a mild case, just a small defect. Of course, that's not the case, but the fact that the radiologist had to ask blew us away. GO DAVIS! 

We've had an overall good day, with a few ups and downs on the vent & oxygen settings. They'll make some changes, Davis will react, and he'll end up compromising with the doctors somewhere in the middle. We keep moving forward in this way... and then back, and then forward again, and so on... we know that as they push Davis more and more, we can expect things to get a little rocky here and there. Still, as long as in the big picture we're moving forward, we are happy. 

It's amazing how strong Davis is, and he's not even a week old. A big part of it is all the people thinking about him and sending him love and prayers. Thank you :)


Peach fuzz

Tonight was a good night! Nurse Jenny decided to give Davis a break from the earphones and eye mask, and we were SO EXCITED to see his sweet little face. He didn't open his eyes, but Jenny says they're a hazel color. Takes after his mama :)

Turns out his fancy BOSE noise canceling headphones didn't have batteries in them, so they weren't doing much of a job. Good thing Dad figured that out, because they're doing some construction tomorrow in the NICU and he'll need them. 

His blood pressure was doing so well that we got to touch him a bit! I got to rub his fuzzy little head, which completely made up for everything that happened earlier. It was amazing! His hair (there's a lot of it) feels just like peach fuzz. 

Who knows what tomorrow might bring, but Davis is stable tonight, which means we can rest easy. We'll take each positive moment and savor it for as long as we can. 

Isn't he just the cutest thing? 


PS: I hope I didn't offend the other ecmo moms in my earlier post. We do appreciate hearing your experiences, especially your successes, and we get a lot of strength from that. Thanks for your words of encouragement :)

Feb 3, 2009

Seeing the forest

Nurse Lindsey gently kicked us out of the NICU a few hours ago. She's right, we need to get some rest, and Davis is in somewhat of a holding pattern right now, but I absolutely hate to leave. His epi (blood pressure medicine) and vent settings are slightly lower, but his oxygen did have to be bumped up 10 points or so this afternoon. Dr. Goldberg and Lakshmi feel that the episode Davis had last night might have been an isolated incident and not a trend. For tonight anyway, we hope to give the "e" word a rest. 

Lakshmi did make us feel a little better about ECMO. I know other mothers say not to worry, but the fact is that ECMO is a big deal with very real risks. We can't ignore that. On the other hand, as Lakshmi pointed out, they wouldn't use ECMO as a last ditch effort. They would only offer ECMO to Davis if they felt his heart and lungs would truly benefit from a brief rest. Davis isn't the typical ECMO baby, because so many of his numbers look so good. There are certain characteristics that babies who do well on ECMO share, and Davis fits that profile, which gives us hope. Lakshmi really thinks he will be ok, and we trust her and Dr. Goldberg infinitely. So, we're trying to get prepared in the event it ends up he does need a little rest. It's scary, there's no way around that, but we have so much faith in Davis and his ability to pull through this. Brad and Kellie are right- we need to count our blessings. Davis has made progress, has been relatively stable, and we are grateful for every single second we have with him. 

Catherine (my big sister) and Karen have been staying with us for the past few days. They have taken such good care of Michael and I. It is such a comfort and blessing to have them here. My sister is one of the best, most genuine people I know. Thank you, Catherine and Karen, for being here for us. We love you so much. 

We are so thankful for all the support and prayers. I think Davis feels it too. 


through the night

I just called Nurse Jenny and Davis held steady through the night. After those few bad hours early in the night, he seemed to level off. They weaned a little bit more on the epi (blood pressure medicine) and his oxygen a very slight bit. He's still on the jet and did need two fluid boluses after we left last night (around 1 am) to keep his pressure up. She said he has gotten very swollen (I noticed the beginnings of that yesterday) and that's probably something they'll talk about in rounds, since it's an indication that something has changed. We are going in a little early today to make rounds, since it's such a critical time for our little man. 

Davis is still doing well considering what he's dealing with and there are lots of supports still available to him, even if some of them are scary to us. I felt in Jenny's voice that the "e" word might be around the corner. I hope not but of course we'll do whatever is in his best interest. We are so lucky to be at Duke, and trying so hard to continue to be positive. 

This is a lot to go through for Davis. He's only been in this world four days, though I know he is stronger than we even see. Please pray extra hard for Davis today. We love you all. 


Two steps forward, One step back....

Well, Davis did not have the greatest evening that he could've had. He spent a lot of time tonight trying to ween off of his blood pressure medication and off of the jet ventilator and the oxygen, but no dice tonight. He did not do well after a while. I guess they will stay stable for a while, continue to check his blood gasses and try again. We are still proud of our little fighter, and although he is very sensitive to noise and movement and all, I believe soon that his blood pressure will level out soon. We are really scared of the possibility of going on ECMO. If he doesn't behave soon....

Medicine is such a strange practice. I am used to thinking that everything has it's own very defined rules and boundaries and laws. If a, then b and so on, but in medicine it is so different. It feels like the "rules" are not straight lines at all but very curvy ones. If a, then b or maybe c and it could even be d but we still don't want to rule out e as a factor (and so on)......  It is exhausting to see these minor adjustments all day. You really do lose sight of the progress he has already made and the goal and everything. Bad days are hard so I hope to tell you that tomorrow was a good one..


Feb 2, 2009

The Plan:

So, today is also a really good day. Davis is doing great and the doctors think that it is time to try to ween him off of the jet vent and go to the traditional ventilator. They think they can do this because the "pressure" that the jet is on can be achieved by the regular ventilator so his chest will be moving in a normal up and down way instead of jiggling 420 times a minute. This is only a plan right now.... If he is able to come off of the jet then he can come off of the paralytic drug and he may be moving in his bed soon. He is also being weened off of his second blood pressure medicine, epinephrine. If he can achieve all of this smoothly he can go to surgery. We are still looking at a long road but at least we can see it now.........

Thank you all so very much for your comments and prayers. We love and miss our friends and family and can't wait to bring our son home to heal.


P.S. this is a photo of Davis' little corner of his room. It is like a jungle of healing.