Free

We were discharged this evening from the hospital! While this is very exciting, it is also overwhelming and a bit scary. We were denied home health and this makes us responsible for his drug weans and 24 hour feeds. 

Right now his drug wean and other medications requires that some medication be given approximately every 2-3 hours and, when coupled with the tube and feeding management there is something required for Sutton every 1-3 hours around the clock. Our hope is that providing our own 24 hour nursing care will be short lived and some of the night time cares will be dramatically reduced after our follow up appointments next week. We should be able to drop a few of the meds by that time as well. 

Even if we don't sleep, it sure is nice to sit on the couch. And eat dinner in our home. And shower in our own shower. It really is the little things! We are so happy to be home and look forward to the great progress in store for Sutton!

I will work tomorrow at posting some of the pictures from our camera to the corresponding posts. Thanks for all of your patience, love, support and prayers over the past 38 days. Please continue to keep all of us in your prayers as we adjust to a new normal and pray that Sutton continues to make great strides. 

A little bite to eat

It has been 5 weeks since Sutton has had anything to eat or drink by mouth. After a quiet weekend where Sutton was on his best behavior and not making anyone nervous, ENT agreed to let us work with speech therapy to begin learning how to swallow again. The first attempt was a bit futile, with a lot of coughing (but also good clearing of secretions) and very little interest from Sutton. I think it probably didn't help that he wasn't being offered the typical things that he would normally eat. However, he did have a lot of interest in his sippy with (thickened) water. The downfall was that he doesn't realize he can't guzzle it yet. So, working with him on patience will be part of this relearning process, too. 

I got a smoothie at lunch and, when I came back into the room, Sutton was watching me very intently. I asked our NP if she was opposed to me sharing and she was initially reluctant, but agreed after some thickener was added. We made A LOT more progress. He was definitely more interested in the flavor and how cold it was. Speech also came back and offered him some whole milk (this was a milestone, it was his first time getting milk) with thickener in a bottle and he did pretty well with that.

I was more encouraged after the smoothie and milk that this will just be a learning process and that I won't have to try to bribe him into eating. That is something we have to do with Cohen ;) Part of his disinterest could be that he is currently getting fed through his J tube, which means the feeds are continuous and he doesn't really feel hungry. Once we transition back to G tube feeds he should show more interest in eating by mouth. 

All in all, today has been very encouraging. It's moments like these that you endure all the difficult days and weeks for. Also, transfer orders have been put in to move us to the floor and from there guess where we go?? HOME! Social work will need to make arrangements for home health and such, but that is what we are waiting on now. The IV meds are no longer a concern as they were able to switch to oral (through his tube) for everything and his last 3 peripheral blood cultures have shown no growth. 

We pray that this is it, we are finally on our way out the door! 

Surprise!

Not really. Did you really think it would be a girl?! Boy #3 coming in November!

Reunited

After getting the okay from the infectious disease team, Kedric brought Cohen in to see Sutton. These two could not have been happier to see each other!

...and you'll never guess who was cleaning the windows here today! 

Instability

The past 48 hours have been an absolute roller coaster. I would almost argue some of the most uncertain, anxiety inducing days of our stay. I say that not because they were any more difficult than preceding rough days, just way more out of left field. 

The virus that Sutton has contracted is pretty nasty when it occurs in hospitalized kiddos. Twice yesterday his fever spiked to extremely high temperatures, he was vomiting, his heart rate went above 200 for a very extended time frame, his blood pressure bottomed out and his tissue perfusion became very poor with skin mottling (where the skin is very pale and the vasculature shows through like a giant spider web) and a very dusky overall appearance. During the second occurrence yesterday evening they gave him several fluid boluses in an attempt to reduce some of those symptoms I mentioned and it took some time for him to regain even mild stability. Once he was transportable, they moved us down to sit directly in front of the nurses station where the physicians and nurse practitioners reside 24/7 when they aren't with patients. He's the unnerving kid now. His heart rate took several hours after he recovered to come down but, thank God, he has been stable since the move. 

Yesterday evening there was discussion about potential reintubation to help maintain respiratory status if they couldn't stabilize him. Other respiratory support options that are less invasive are not okay right now because of all of his neck surgeries. If he hadn't been as healthy as he was then this could have quickly turned into a disaster. I just think how bad this could have been two or three weeks ago and am so thankful at the timing of all of this. We are grateful that God protected Sutton at his points of most vulnerability and continues to guide us and his care team in making the best decisions for his care.

The preliminary blood cultures have returned and are growing yeast from his PICC line. PICC lines are a high infection risk, so we're not surprised that he got an infection after nearly 5 weeks, but it adds insult to injury. They started a peripheral IV and an anti fungal and pulled the PICC line. 

Today actually marks the day we would have been discharged home from our NICU stay. We spent 32 days there and we are on day 32 here. Bummer. But he does seem to be feeling better today and, thanks to scheduled IV Tylenol and regular use of ibuprofen, he hasn't spiked a fever again since yesterday evening. 

We are back to advancing feeds again and, without any further setbacks, he will be up to goal feeds in 24 hours. Then they can work at his med wean again. He had been on oral meds through his GJ, but was transitioned back to IV after he began to decline Tuesday evening. Once he is at his goal rate for feeds and tolerating oral meds again there will be no more need for IV access. This is good because they had a killer time getting this IV placed (it's in his foot) and if it won't hold up they may need to insert another PICC. So we're hopeful the IV will at least hold out long enough to make these transitions and then it won't be essential. 

Thank you for your continued prayers for his healing and progress. 

Isolation

Remember that sweet little nap Sutton took on the front of me yesterday afternoon? Red flag. His vitals had been a bit wonky during the day, but nothing super crazy, and he was just acting like he was in a funk. Funk is an understatement. 

He had previously been taken down to monitoring through his pulse ox only, but now he has gotten the typical ICU monitoring back. His heart rate has been high, he's been running a low grade fever even with Tylenol, he's coughing tons of secretions, and has vomiting and diarrhea. He has also been requiring oxygen. 

They had started him on antibiotics after they sent off a few different tests, but one test has now come back and he has a virus. We're just going to have to manage his symptoms until he recovers. 

He's not sleeping well and very tearful. I want so desperately to climb in with him, snuggle him and make him feel better, but I've been warned to be cautious because this can get bad for a pregnant woman. So I suction him, give him his pacifier and rub/pat him until he dozes for a little while and then I wash my hands and wait for him to stir again. 

As far as any forward steps with speech pathology - I don't think I'm taking a huge leap in assuming that will be rain checked. 

Please pray for his comfort and quick recovery. And for me and baby B #3 to stay healthy. Thank you so much for the continual prayers. 

Leaps and bounds

Over the weekend Sutton made phenomenal progress in managing his secretions. He cut his suctioning by more than 50%!

Yesterday, his neck sutures were removed. The incision looks really good. Our ENT did a great job working it into a fold on his neck, so as it heals it will not be terribly noticeable. 

Also, his G button was advanced to a G-J button and his feeds were restarted. His secretions started to pick up again after the advancement, but before tube feeds, and he vomited bile again shortly after his feeds were restarted. This kid. They opted to vent the G portion of his button while maintaining feeds in the J portion. The G portion has been putting out fewer gastric secretions today, but he is still vomiting bile today when he coughs excessively, so I think it was the right call to advance his button so his feeds could go into his small intestine and avoid being refluxed. General surgery says they are comfortable continuing the advancement of his feeds. He is currently up to 1/3 of goal feeds without refluxing any of it!

The biggest news of the day: ENT did a portable fiber optic scope at his bedside to determine vocal cord function and view the upper portion of his esophageal repair. HIS CORDS ARE TOUCHING!! I know this may seem a bit shouty, but do you know what this means?!! He gets to work with speech therapy to try some thickened liquids and possibly some finger foods. We're hoping that will happen tomorrow, but it depends on their schedule. Now, the portable scope showed that the cords were only weakly coming together, but THEY ARE COMING TOGETHER! This is huge progress. His voice is remarkably stronger than a week ago. We are so excited about this progress even though we still have a pretty decent road ahead of us. 

She also noted that there is still a decent amount of swelling internally and the sutures seem to be causing some minor irritation. We will just have to let time pass for the sutures to dissolve and the swelling to recede. 

ENT would like to scope again at a later date to have video function so she can see how well each cord is moving. She thought she saw some twitching on the (previously paralyzed) right side, but without better visualization she's not sure. 

We are keeping up with the hope that we could be discharged home late this week or early next week. Please pray for his continued forward progress. 

And here is a picture of some sweet post-scope snuggles and a nap (he's not a big snuggler, so this was very special for mama). 

A visit to the rooftop garden

Staying in the PICU

After a turbulent several days and much discussion with the team of people caring for Sutton, we have come to the conclusion that he is requiring far too much care to be suitable for transferring to the floor. The idea may be revisited on Monday, but there is significant potential that he may stay in the PICU until discharge. This is not common practice, but sometimes kids with more complex cases (and his is far from normal) do this.

His respiratory status has not improved much since last weekends roller coaster of events. Please don't mistake me, he is stable. However, his vital signs frequently sit just at the edge of normal and he requires frequent, sometimes every 15 minutes, suctioning around the clock.

He is also still having difficulty tolerating the tube feeds. He made it up to a whopping 1/3 of his goal feed and started vomiting again last night. He doesn't seem bothered by it, but there is still significant concern for aspiration. He is back to TPN and lipids as his primary nutrition. While trying to sell the case that I didn't want to send him for another procedure to advance the location of his G button into a G-J and could we try a different formula instead, he began vomiting bile. It's not the formula. It is something in his GI system causing the problem and the pediatric surgeon thinks that this will band aid the issue until Sutton's gut begins to work appropriately again.

To make a very long and tedious story short, I have been back and forth from the hospital to home every day since Wednesday. I wanted to spend some time with Cohen and that has been significantly impacted by different events the past few days. So we agreed this morning that nothing would happen until Monday. We won't revisit the idea of transferring to the floor and he won't have the G-J placed until then either. In the mean time, they are going to try some medications and see if they don't help Sutton's gut work more efficiently. We would greatly appreciate prayers that his body will be responsive to these medications and that, if they are not, the integrity of his surgical site will remain despite the advancement of his G button into a G-J. Where the G-J would drop off internally would be very close to the site they harvested from his small intestine to repair his esophagus and it is not ideal to be putting additional pressure there this soon after surgery. However, we are confident in the discretion of his medical team and the pediatric surgeon feels comfortable taking this step Monday if we need to.

Kedric and I will head back to the hospital bright and early tomorrow to spend the weekend with an increasingly spirited and cheerful boy. We thank God that these issues we can't seem to resolve are relatively minor at this point. And we are thankful that, despite his otherwise improving status, the PICU team wants to keep him with them at this time. We have been with them for four weeks now and have built a good working relationship with the nurses, techs, respiratory therapists, physicians, nurse practitioners, etc. I feel more at ease leaving Sutton in their care when I would like to come home and spend time with Cohen because of this.

Please continue to pray for our discernment as we make decisions in uncharted territory and for Sutton's health status to continue to improve. We can go home with things as they are now, but we would require a lot of help to do that. We will not be returning to our previous norm for some time. Physicians are trying to give him some time to see if any of these problems may resolve before discharge for his safety once he returns home.

Changes

Sutton seems to be doing better today. Up until late yesterday afternoon he was still having a pretty rough time. Yesterday he vomited twice in the morning and again right before bed last night. He also vomited a very small amount this morning during rounds after a coughing episode. The problem is his feeds were cut off over the weekend and he was reverted back to IV nutrition only, so what is causing the vomit when it is unrelated to coughing? Also, the color has us wondering if it is just bile or old blood. If it is blood, at least it's old.

The answer to that question is: they aren't sure. We have discussed several possibilities and the changes that were settled on for today include increasing the medication that helps to dry his secretions. While this medication can also make them thick and difficult to move, it had been removed from his regimen entirely so we're going back to a low dose to see if it will help with the coughing fits and vomiting.

They have decided to go ahead and reintroduce tube feeds, at 1/15 the rate he was previously at, since that doesn't seem to be the root cause of the vomiting. They will slowly increase this rate and decrease the IV nutrition as his body allows.

He also remains on oxygen with PD from respiratory therapy. PD is a treatment from respiratory that he actually likes (unlike the IPV he got while he was intubated) since it feels a bit like a massage. They have increased the frequency of the PD during the day and have also initiated a breathing treatment due to changing vital signs. They had discussed high flow oxygen, but that was ruled out because of concerns over damaging the internal repairs in his neck. They decided heliox, a helium oxygen combination, would be a better choice because it doesn't require the high pressure, but it does decrease his cough. With the level of secretions he is battling right now the cough is the only thing saving him from major aspiration problems. So, since the breathing treatments seem to give him some relief they are going to hold off on the heliox for now.

Another chest x-ray and respiratory viral swab were unremarkable.

I feel better about today than I did yesterday morning. Yesterday was a bad day. But I still don't feel at ease about these breathing and vomiting issues. I am primarily concerned about how the vomiting is compounding the breathing problems and what these issues will mean for his respiratory status long term.

The good news is, his drug wean has continued to go without incident and he is now off of all continuous drips! The next step, though he isn't there just yet, is to move to oral medications through his button instead of the IV doses he is still getting. For the amount of medications he was on his drug wean has gone relatively fast and he has tolerated it well.

He also has windows of normalcy. He wants to sit up in his bed or on my lap and play and he is starting to fall back into his normal sleep routine as best he can here at the hospital. He is regaining strength and can pull himself around in his bed, though he has not quite regained enough strength to pull himself to standing. This is a saving grace, because it is pretty tricky to get him to sit still for any length of time when he is feeling well.

Additionally, his vocal cords sound as though they are getting stronger. He called out for me this morning and I was able to hear him from the chair behind his bed! Regaining movement in his cord or cords would alleviate many of the problems we are currently battling and we hope that he continues to improve in this area. At this time there is still no movement from the right cord. 

I just look forward so much to this time next week. Or next month. Or next year. I know the further we get out from surgery the more his body will have recovered and, hopefully, the more stable our days will become. Please pray for an improved respiratory status overall and to find a root cause of these problems so that we can work towards getting them resolved. Also, for continued improvement in his regaining strength in his vocal cords.

"A smooth sea never made a skilled sailor." -English Proverb

Two steps forward, one step back

Kedric and I went to pick Cohen up at the end of the week and when we all returned there wasn't much excitement. Unfortunately, the weekend has progressively declined. Here's the condensed version. 

Fair St. Louis was in Forest Park this year. Lucky for us, Sutton's room just happens to overlook pretty much the entire park, so we opted for family fireworks from the hospital. We didn't end up seeing much of the fireworks because (1) Cohen was, understandably, less than willing to sit still after a long car ride back from Michigan and (2) Sutton seemed to have some secretions he just couldn't get loose and cough up. Due to his history and the fact that he has recently had several surgeries on his neck, he has been labeled as a difficult intubation. He has a big green 'AIRWAY' sign hanging above his bed. We have been informed he is actually an easy intubation, however there is concern about further damage to his neck and esophagus if reintubation were necessary. In an effort to prevent such damage, ENT and anesthesia are paged at the first sign of concern so that they can be the ones to intervene, if necessary. 

I say all that to help explain the past few nights. Up to this point, no calls to ENT or anesthesia for such concerns have been necessary. However, in the past 48 hours they have been called 3 times. He has been retracting (or pulling in when breathing - this happens when someone is needing to work much harder than is typically necessary to breathe) since extubation, but everything else was within normal limits. So, we have just been observant of whether he has been working harder, about the same or not working as hard to breathe.

On Friday evening it seemed as though he had some secretions stuck and was having difficulty moving them. His vital signs were showing that he was no longer compensating and was having increasing difficulty breathing. Page #1. He finally was able to clear the secretions and he got a breathing treatment. They also made some changes to the medication he has been getting to help decrease how frequently we are needing to suction him because it can make secretions much thicker and more difficult to cough up.  

Saturday morning we encountered a similar issue. Plus he vomited a bunch of his tube feed. A little spit up can be a big problem in someone that cannot currently protect their airway. Page #2. He got another breathing treatment and no changes were made to his meds. 

We took Cohen to a get together with some friends Saturday evening and then dropped him off nearby for the night. When we returned to the hospital there were a bunch of staff members at his bedside. That's never a good sign. He hadn't really done anything markedly suspicious at that point, but his nurse just felt like things weren't sitting quite right. His vitals were still within normal limits, but they were off for him. Page #3. Let me interject here to say that this is one of the many reasons we opted for COBRA so that we could keep him at Children's with the physicians that have been with him since birth. The care we have received during this visit and when he was in the NICU has been the best care with the most well functioning, genuinely kind and caring, knowledgeable body of health care team members I have probably ever seen. It takes much of the tension out of an already unnerving situation. Anyhow, the same interventions as incidents one and two were employed. The night was long and restless and by morning he had been put back on oxygen. No good. A little oxygen is no big deal in and of itself. However, he's been working extra hard to breathe for just over a week since extubation and an increased need for oxygen could also be a sign that he is tiring out. This could result in a need to be reintubated. 

This morning, we had a long discussion with ENT about his slowly declining ability to compensate. A chest x-ray showed no major signs of aspiration, though many of the secretions we are suctioning very obviously have tube feeding in them. His feedings are currently being held to see if that will spark any improvement.  If that seems to help he will be moved back towards goal feeds at a slower rate. The medication for his secretions was adjusted again in the hopes that thinning them out a bit will take some of the work out of clearing them. A respiratory viral test showed no signs of infection, so they ruled that out as the root cause of these problems. And then the elephant in the room: a trach is not off the table. Unfortunately, it has been removed from the (very far) back burner we had placed it on. It is not a decision we are needing to make right now, but if he doesn't start to improve then the topic may be brought to the forefront. Our ENT has worked very diligently with us over the past year to keep this from becoming a reality so she isn't going to rush into this as an option, but it has become an unwelcome topic of conversation again. 

This was also disappointing because prior to these episodes starting we were simply med weaning. Once he made some progress there we were headed home. Now we are looking at a minimum of another week here. And, honestly, I don't want to take him home like this. I can't possibly provide the kind of safe care he needs 24 hours a day. He must never lay flat, even to sleep, and he has to be suctioned frequently around the clock. Not to mention he can't take anything by mouth and we have a 3 year old at home that is accustomed to sharing meals with and offering food to his little brother. These needs are only compounded by the fact that 3 weeks ago he was running around like a 'normal' one year old and now we are trying to contain him to a bed and make him follow rules. This has been a near impossible task. There was even a possibility of working with speech therapy tomorrow with some puréed foods to see if he could tolerate them. Not anymore. Now he isn't even getting the lousy tube feeds. 

If you can't tell, this is all very frustrating. One minute we think we're on our way out the the door and then the door is slammed. Kedric and I have been encouraged with compliments of how well we have been handling the situation and the curve balls that have come our way. But, as I've heard many other parents with sick children say, we don't have any choice. If it were up to me this wouldn't be any part of our life. I think the struggle for me right now isn't each individual thing that goes wrong, because we can handle them one by one. It's the fact that the past year at our house has been relatively normal with a few very minor exceptions. Now it's not like that. Now he can't eat or drink. Now he can't sleep in his own bed on his belly like he prefers. Now we could end up going home with much more than a feeding tube. All of this with a new baby coming in November. Talk about stressful. 

A little bit of good news in all of this is that the drug wean seems to be moving along without incident and Sutton has quickly regained some of his usual spunk. He also seems to be regaining some of his strength and muscle control. For these things we are very thankful! 

Please don't misunderstand, I am so unbelievably grateful for the progress he's made up to this point and for our ability to have been pretty normal over the past year, but my optimism for the current situation seems to have reached its max. Hopefully a restful night will lend me some better perspective. 

"Even the darkest night will end and the sun will rise." 

These are far from the darkest nights we've encountered, especially related specifically to these last few weeks, but my patience, peace and perspective are wearing very thin. I want to go home. I want Sutton to be out of the hospital. I want to leave this very difficult chapter of our lives behind. 

Accessory removal

The past few days have been wonderful. I mean downright blissful. If we were at home in our normal setting I would probably classify them as one of those days we just muddled through, but in full glance of the circumstance it has been great. On Sunday and Monday we were allowed to get Sutton out of bed and hold him for as long as he would tolerate. Eventually he got tired, but as you can see in the picture he was one very happy guy! (Sorry for the picture of the back of the camera - I don't have a computer to load them on here, so this was the best I could do).

On Monday he had an esophagram to look at the lower portion of the graft and it seems to be holding up very well. Unfortunately, there is no great option to observe the upper portion at this time as scoping him is not safe at this stage of healing. He is aspirating a little bit, but that is not unexpected given his current vocal cord function. 

Tuesday, occupational therapy got him a "feeding chair." Obviously he won't be doing any feeding of himself in it (other than the measly 2 ml he is getting every hour through his button right now), but he had a grand time sitting up in the chair and playing. So well that he got his best nap (several hours) and best nights sleep (his normal bedtime of about 8:00 p.m. until 5:30 a.m. with minor disturbances throughout the night) yet. 

Today he went back to the OR to have the external tissue flap and his two drains removed. He also had a larger PICC line placed because he had pulled his out a couple of centimeters. His neck is fully stitched now, but where the drains came out was left open and just covered with gauze so drainage can continue to escape as he heals. He's starting to look like a baby again! 

They also took a look at his airway and vocal cords today, but we have not gotten the report from ENT yet. Plastic surgery did say when they were trying to visualize the other structures, they got a glimpse of the upper portion of the tissue graft and it was nice and pink. 

Sutton is really loving the burial of his soft arm restraints and his ability to move (within reason) however he would be most comfortable. He is a little upset right now, most likely from a sore throat from reintubation/extubation and them looking at his airway and vocal cords, but our nurse seems to have a good grip on getting him comfortable. 

Tomorrow we should get a weaning schedule for all of the medications he has been on. We will be moving to some doses through his button instead of IV, since that is what he will be sent home with. 

All in all we are seeing continual, forward progress. We can't ask for anything more than that! Thank you for all the prayers for his safety and progress as well as for us in helping to maintain patience, peace and perspective!

"But the LORD stood at my side and gave me strength." 2 Timothy 4:17