Moving forward

Yesterday we had another potential hiccup brought to light: it is possible there was some nerve damage done during one or both surgeries. The doctors aren't certain that's what is going on as the evidence popped up after some med changes. The good news is that, med change or nerve problem, both are resolvable; though there are no guarantees if it is related to nerve injury.

What alarmed us? Well, Sutton got very mad yesterday and developed a 'two-face' appearance. Like, Batman style. The left side of his face turned very red and sweaty (this is normal for him) and the right side of his face stayed cool and had normal skin coloration with a slightly droopy eyelid - with a very precise line right down the middle of his face. The discoloration is still visible today, though it is very faint, and when he is more awake he can open his eyes symmetrically. Just like many other things we are watching and waiting. 

Today we have had some big strides. When plastic surgery came around we asked if it would be okay to sit him up in bed for a little bit. She cleared us, so he sat up for a few minutes! He is incredibly weak and has head control similar to a newborn, but it helped him get some new positioning (which has been very limited due to the tissue flap) and move a lot of the secretions out. 

Afterwards we positioned him as best we could "sitting" in bed and turned on a movie. For those of you that know us well, you know we haven't had cable in years and watching TV is a very rare occasion in our home. That being said, our kids love the special treat of being able to watch a video. After repositioning and turning on a movie, Sutton has been downright happy for the first time since June 16. He waved, happily kicked his legs and even gave his daddy a little smile. There is finally a little light at the end of the tunnel. Even though we know there may be more challenging days that lay ahead I think there is finally a little grain of hope and excitement that normalcy, or some version of it, isn't too far down the road. 

Also, he seems to be regaining some strength in his vocal cords. This will really be our hold up when it comes to eating by mouth again because if the cords are not functioning well they can't protect his airway and he could easily swallow food or drink into his lungs. We aren't naive enough to think the strength in the right vocal cord will develop rapidly after a year of little to no movement or that the left one can learn to compensate fully in a few days, but his tiny dinosaur noises (as we lovingly refer to them) are getting stronger. At this point his cry is just slightly above the sound of a whisper, so we've got a ways to go, but he is progressing. 

Overall, we'd call the last two days a win. Cheers to many more days on this side of his recovery!

Extubation

The physicians determined this morning that Sutton still has function of his left vocal cord, though the right is questionable. The right cord has been compressed for the past year due to the hygroma, so it may take more time for function to return on that side. This is another watch and wait item on our list. However, since he had decent function of his left side still, they opted for extubation. He came back from the OR about 10:30 a.m. and had already been extubated about 45 minutes while the physicians observed him.

He was a bit wild when he came back because all of his sedation and pain meds had to be replaced last night with something that would allow them to see if he could breathe on his own while keeping him sedated. Unfortunately, it is a medication that can only be used safely for the short term (less than 24 hours) and it wears off very quickly once they stop it. There is a happy medium now, with Sutton returning to many of his previous medications, but at much lower doses. He is opening his eyes now and is significantly less agitated. He has a lot of secretions that he is trying to get rid of, but they seem to be clearing relatively quickly.

Today has gone as well as we could have possibly hoped. Thank you for praying with us for his healing! We hope he continues along this path for the remainder of his stay.

Plastic surgery came in today to look at the exterior tissue flap and all is continuing to go well there, too. She even said he is progressing faster than she anticipated. We are very happy with his outcomes overall at this juncture and we hope he continues to impress all of us with his progress.

"The LORD has done great things for us, and we are filled with joy." Psalm 126:3

The next step on the road to recovery

Last night and today have been very challenging for pain control and sedation. Sutton has built up a tolerance to many of the medications we are using because he has a history with using them in the NICU and because of the high doses he has required during this stay in order to achieve any level of comfort. We did finally achieve a good balance after doctors changed the dosing of certain meds and added new ones. Unfortunately, the levels of medication he is requiring make this a (very) short term solution.

Some of the problems we are running into include maintaining the integrity of the graft in his esophagus as well as the tissue flap on the exterior that allows visualization of whether the tissue internally is holding up. Sutton flails about in the bed when he is not well sedated and the movement at his neck could damage these things. It seems some of what he flails about for is pain, but the majority seems to be agitation. After much discussion it was decided some of the agitation could be the result of being intubated. There are inherent risks with remaining intubated if he can be extubated, but if he can't be cooperative then he would need to be sedated in order to protect the graft. And he can't be sedated using the levels of drugs we are currently using without being intubated. We have a catch 22.

The current consensus seems to be that he return to the OR tomorrow to attempt extubation in a controlled environment. They want to visualize his vocal cords because, if they are not moving sufficiently, then extubation will fail. If they are not moving well the doctors will reintubate with a nasotracheal tube (through his nose) instead of the endotracheal tube (through his mouth) in an attempt to reduce agitation and also allow for some of his pre-hospitalization self soothing mechanisms to be utilized (pacifier). This will allow more time for the vocal cords to heal and then they can attempt extubation next week when he goes back to the OR to remove the tissue flap.

Plastic surgery is tentatively looking at next Wednesday for removal of the tissue flap. If he becomes too rambunctious before then and it is no longer safe to have the flap, it will be removed. This would not hurt the integrity of the internal graft, it would just mean that visualization for how well it is healing would be lost.

Today he started a new respiratory treatment and the IPV was discontinued. The new treatment uses vibration through a small tube on the outside of his chest to help keep his lungs in good working order and help cough up secretions. He still doesn't like this treatment much (though he doesn't like much of anything these days) but he is more tolerant of it than he was of the IPV.

I think we are very hopeful for tomorrow. Even if he can't be extubated (which is a very sensitive issue for us due to the psychological trauma of his initial, failed extubation in the NICU) we are hopeful that he will be less agitated with a nasotracheal tube and that a decrease in sedation will allow us to interact with him more. As of right now we just sit at his bedside. He is so highly sensitive that we do not touch him or talk above a whisper unless we are having to hold him down until the next round of boluses kick in.

That has probably been the hardest part for me this time around and I'm sure it hasn't been easy for Kedric either. I can't calm my child in any way and when he tries to express to me that he is in pain or angry, the only thing I can do is hold him down (so he doesn't damage the graft) and pray that this round of boluses will work. I would love to not have to spend the next week like this, for him and for us, so please pray for well functioning vocal cords and a smooth extubation or, at the very least, less agitation for Sutton.

Happy 1st birthday Sutton!

We celebrated last week before surgery because we knew we would be in the hospital on his birthday. Now, with him being unable to eat by mouth for an unspecified time frame we are very thankful we had the forethought to do that. Because HE. LOVED. CAKE. 

We're celebrating as best we can under the circumstances, in the hope that next year will look better and brighter. We're hoping he'll be able to spend his next birthday extubated as this year and last year he's had no such luck. Here are some of the decorations, gifts and balloons:

And these are his favorite gifts (from the doctors and nurses):

Last night went well and his pain has been well controlled. The tissue remains sufficiently vascularized, so the plan continues to move forward. 

This is a sucky first birthday for a kid, no doubt, but we have high hopes that they will only get better from here! 

Thanks to all of our family and friends who have offered support through kind and encouraging words, spent time with us at the hospital, brought us yummy food, taken care of Cohen and maintained our home. We appreciate all of your continued efforts to make this experience as minimally stressful as possible. God has blessed us with some really wonderful people. 

All done!

Sutton has been recovered in the PICU and he is looking good. They will maintain him on blood thinners to try and prevent any damage to the revascularized area and he will be given a paralytic with his other sedation and pain killers to prevent tension on the sutures in his esophagus that come with certain movements. 

A recap of surgery: Everything went as well as the physicians could have hoped for. The tissue from his jejunum revascularized very well. He has a small out pouch of tissue on his neck to help them visualize the blood flow and know if the tissue internally is holding up. This will likely be removed in 7-10 days once they are confident the tissue has begun to grow in well with the esophagus and maintains a sufficient blood supply. He has 2 drains in his neck and an NG tube to help the air escape in his abdomen. 

Sometimes you do not get to see the silver lining to your struggles and sometimes you get to see it, but it's very far down the road. And sometimes, you get to see it a week later when the surgeons repair damage done in a previous surgery. When they entered his intestines to retrieve the piece of the jejunum they were going to use, they found a small pouch in his intestines that was priming him for a bowel obstruction. So, they removed that. What if the damage had not been done? What if they had been able to repair his esophagus without utilizing tissue from somewhere else? We would not have known about that and he would have had (potentially serious) issues down the road. 

We're very pleased with the success of today's surgery, but there is still some uneasiness about how the tissue will hold up. It revascularized as well as they could have hoped, but that is not a guarantee that the graft will be successful. We are cautiously optimistic. There was also a small area in the esophagus that they could not suture because they felt more damage would be done trying to get to that region than leaving it unstitched. Our prayers continue to be in gratitude for the safety of our child, but we are also praying that the tissue graft will be successful and that the unstitched area will heal well without incident. Just as it was last week we are also watching for infection. 

Thank you for your continued prayers as Sutton moves through the healing process. 

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10

6:05 p.m. update

The surgeon called and they are done suturing the lower end of the graft. Everything looks great and has good blood flow. They will take another look internally to make sure they don't need an extra stitch somewhere. They will start closing up soon. He is ALMOST. DONE. 

5:24 p.m. update

They have just finished suturing the upper portion. It took much longer than anticipated, but everything is still looking great. They took a look at the area from inside as well and the sutured area looks very secure. They had thought attaching the upper portion would be more difficult, so we are not surprised at the length of time it has taken. The general surgery physician has taken over to attach the lower portion. We are so thrilled at the progression today!