Progress

We have been following up with ENT, pediatric surgery and speech therapy every two weeks since Sutton's discharge. We have also worked with our pediatrician to find a local speech therapist so that once we are no longer frequently visiting SLCH Sutton can continue to advance his eating skills.

While the progress feels painstakingly slow for me, his physicians feel like he is making great strides. He can swallow some purees right now (as long as they're not too thin) and speech gave us the go ahead yesterday to give him some "solids." By that I mean squishing tiny bits of fruit between my fingers so that the "solids" will slide down his throat easily. Since he's still learning how to swallow and coughs pretty much anything besides the purees back out, he can only have the things that would navigate down his throat without a lot of extra work. He is doing so much work as it is. We are so proud of him! I've been told that an oral aversion is not uncommon in kids that have been through similar issues, especially after intubation, and we are so thankful that this is not a battle we have had to fight. He is definitely interested in eating still!

Surgery and the dietician have been helping us to transition from his continuous J tube feeds, which are delivered directly into his small intestine, to bolus G tube feeds, which are large volumes delivered a few times a day into his stomach. Right now we are transitioning which means that Sutton gets much more freedom during his awake hours to move around without being attached to the tube. It also means that this mama is setting up and tearing down feeds six different times throughout the day. The day is pretty well consumed with tube feeds or attempting to eat. But Sutton finally feels a little freedom and normalcy and that's what we want. 

Now he and Cohen get to be like regular brothers - with all the love and wrestling that entails :)

First round of follow up visits

Earlier this week Sutton checked in for his (belated) one year visit. All is well and his pediatrician felt he was progressing along a reasonable timeline, even if we didn't factor in almost 6 weeks in the hospital. Go buddy! At this point he is now nearly pulling to standing and crawling on all fours (versus army crawling). He also walks a bit if you hold his hands. He was not doing these things prior to entering the hospital, so it seems a week or so at home has been good for him.

On Thursday we followed up in St. Louis with plastic surgery, pediatric surgery, ENT, speech therapy and dietary. Overall, it was a good day. Not much to report in the way of changes, but he is making forward progress no matter how small the steps seem sometimes. Also, his sedative/narcotic wean is complete. For these things we are very thankful!

ENT: She just did a basic assessment and feels he is continuing to heal well. We will return in 2 weeks for another fiber optic scope. We are anxious to see this because his level of secretions has decreased and tolerance to coughing (without vomiting) has increased, so we think his sutures may have fallen out finally and some swelling may be going down even more. We are also curious to see his vocal cord function and if his esophagus is constricting even more through the healing process.

Plastic surgery: These are mostly social visits, but we did talk about the possibility that his esophagus may need to be dilated already. She felt this was promising as it indicates good healing, but would not want to do any dilation until about 12 weeks post-op from the esophageal repair. That is nearly 6 weeks out. This was kind of a bummer, as I had hoped we would be progressing back to table food faster than that, but we obviously want to be as safe as possible in maintaining the integrity of the repair.

Dietary and pediatric surgery: They officially gave us an hour a day off of tube feeds by adding more water intake and increasing his hourly rate. Truth be told, we were already taking 30-60 minutes off during bath time. We were hoping for more time off during the day, but since we have tried to move forward and had setbacks so many times they are moving at a slower pace. We will touch base with pediatric surgery again next week over the phone to see how he is tolerating this adjustment and possibly make some more changes. We will visit with them again in 2 weeks to make more changes. We will be in communication with dietary as well with the results of his twice monthly weight checks and how much he is taking in orally.

Speech therapy: Because he still has no feelings of hunger and difficulty managing his secretions and swallowing, speech therapy didn't make any adjustments right now. They encouraged us to let him play in food and make a mess to help keep him interested. This has been hard for me, but Sutton has thoroughly enjoyed it!

We are also currently working with our insurance company to get a home health night nurse for some relief for us. It is very challenging providing 24 hour care and trying to maintain your life and care for your family. With Cohen returning home finally this will become even more of a challenge. Prayers that we could get some help, even just a few nights a week, would be greatly appreciated.

Bottom line: the last week has been challenging, but it's been SO GOOD for all of us to be home. 

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.