Post Op Calcaneal Osteotomies Day 4

As I mentioned in my last post Ainsley's airway got progressively noisier yesterday afternoon. At night it was clear she was having a little trouble breathing. She kept crying and pointing at her trach stoma scar. She was sounding kind of bad despite having her CPAP mask on. I told the night nurse that I was concerned but hoped it would be okay overnight and we could call the next day if needed.

She took the liberty of telling the ortho team and they called in Pulmonary and ENT. Pulmonary ordered lung x-rays and a virus swab. The nurse agreed that her lungs sounded clear (so unlikely to be pneumonia, which Ainsley never gets) and that it appeared to an issue in the upper airway. I was glad to have her support. It gave me the courage to declined their recommended tests. Then Pulmonary sent a med student. I felt bad for her. She went away and came back with a real Pulmonary doctor and I went over it all AGAIN. He was nice and funny and took the time to look up the lung CT that was done as an add on to the surgery. 

Intubation is hard on anyone's airway, so we didn't want to intubated to get a lung CT but her pulmonologist did want to see the status of her lungs since it had been awhile and she had/has brochiectasis. It is likely from her time with reflux as a baby. The doc who came this morning was not her doc so I recounted the whole medical history and how the bronciectasis was found by Dr. Cotton's team in Cincinnati when we traveled there. I hadn't been happy with the care we were getting here. It was because of their testing (routine lung CT and Impedance Probe testing for reflux) that we discovered it and the seriousness of it. 

Today's doc was kind enough to bring up Monday's CT and even compare it to the one she had a few years back. There has been no progression and Ainsley is the healthiest sick kid you'll find. No pneumonias since she was a baby in the NICU. He said he was very underwhelmed. Clearly though she has what could be a very serious condition, in her case it is not. He said it is likely "tire tracks" from the time prior to her Nissen Fundoplication. We discussed the fact that if I hadn't taken her to Cincinnati so many years ago she likely would have suffered much more serious damage to her lungs. Thanks to the ladies on the Tracheostomy.com forum for teaching me so much in those early years and pointing me in the right direction!  At the end I apologized for being difficult and he said absolutely not, I'm being a terrific advocate. Which was so nice to hear. But being a terrific advocate is exhausting. In the end they agreed that she didn't need the testing at this time.

 Initially I told all of them it was an ENT issue that is related to the issue she's had since birth. But it was great that I got such a quick reading of the results, and he is going to discuss with Ainsley's Pulmonologist.

Then they sent the ENT resident who also seemed pretty green. I've grown to have less patience for training. The attending ENT is not particularly focused on airway and didn't bother to come. Together they all (Pulm and ENT) agreed on a 3 dose set of steroids since it seemed the airway trouble started about the time her initial dose of steroids from operating day was wearing off. I told them I think when she stops crying so much her airway will likely calm down. I think right now it's sore and hoarse. 

 

Ainsley's surgeon came by again to check on her and discuss the plan. Ainsley faked a smile. As you can see she was not particularly peppy. But, yesterday they had turned off the epidural meds and switched her to oral so that if she did well we could pull the epidural today without risk. That was done around noon and she was quite a bit happier after that. 

They pulled the catheter out of her back. Wow that was something to see. They removed the Foley catheter which you can image she really hated. They removed the tailbone padded protection and pulled all the monitor stickies. In addition they locked the IV. Although she wanted it gone they have to be sure her airway is going to be okay first. At least it was better not being connected. That meant we could get out of bed. 

 PT came after the removal and we learned how to transfer her with a slide board. We will have to be doing this over the next 6 weeks since she cannot bear any weight on her feet. In addition we will be using a bedside commode. We are required to demonstrate that we can do it before they'll send us home. So that was a major achievement of the day. In addition she had to show that she can pee after the catheter removal, which she did. Later she had a BM which is also an important part of showing they are ready to go home.

Once we transferred her into the monster wheelchair we went to the ChildLife center to get some new movies for her to watch. She wasn't impressed with the art, the movies, the playground. Nothing.

We tried to sit on the deck that happens to be outside of our room to wait for the PT to return to help get her back into bed. She didn't want to be outside enjoying the sun, was unhappy, tired and wanted to go back to bed. We aren't quite there but things are improving.She smiled for a kind lady who told us about her daughter who has CP who has been here for nearly a month after complications from spinal fusion.  She smiled earlier for the Pulmonary doctor and that's it. 

By the evening she was doing a bit better. I got Netflix going on her iPad and she was pretty happy about that. I sense that she is on the mend and we'll be discharged by tomorrow afternoon. 

As I sat in by bed trying to gather these pictures she showed me Teddy and asked to take off his leg casts. I guess I was right about Dolly. It's a funny thing the relationship between a mother and her non-verbal child. There is a special connection between us in a way that is so difficult to explain. I know her without words. I am her voice and protector. And yet there are times like these I want to weep for all things she cannot fully explain to me or anyone else. 

During this hospitalization I have been reminded many times how much harder it is to have a non-verbal child and how much simpler this whole thing would be if my child could simply answer the doctors herself, talk to the nurse, tell us what she feels like eating or even complain about what is happening. The nurse last night remarked at how well Ainsley was doing compared to the kids who typically have this surgery. I thought about it and reminded her that if we could hear Ainsley cry she would have a very different impression.  Her vocal cords are so sore from crying they hurt but no one every hears her because they clamp shut and no air escapes. 

As I think about some of the negative experiences we had this surgery I think that is the one thing I'd like medical providers to realize is that there is a huge increased demand for parents of non-verbal (and non-ambulatory) children during their stays at the hospital. I am providing medical care, acting as the informer for a very complex medical history. While they are here for a period of time I am "on duty" day and night for the entire hospital stay and then primary caregiver when we get home. Although I routinely decline hospital surveys with the social workers so I can reserve my energy and attention for Ainsley perhaps it is time to really give them some feedback. For the most part things have gone well. It might sound like it's been terrible, but really this is a hard set of surgeries to have and it really could be far worse. We are fortunate that she is healthy and recovering well. We knew this would be no picnic going into it. I've been dreading it but now it's done and soon enough it will all be over and hopefully worth it.

Thanks for checking in on us. XOXOXO