Tuesday December 9th started off with a bang.
As all the doctors arrived, we were greeted with the results of Colton's brain MRI from the night before. The news was not encouraging. The radiologists were reading Colton's MRI as HIE or hypoxic ischemic encephalopathy ( see this link for more information HIE). Please do not take the information on the link as gospel. I am just providing the link for more information. If you read the link, in my opinion Colton's symptoms fit the moderately severe category. The doctors all think that Colton's injury occurred prior to his birth. They are not sure about the time frame though. As far as what this diagnosis means for the future remains to be seen. Colton has been steadily able to increase movements and is less hypotonic (floppy) and is breathing more on his own. We have had some wonderful help in the the form of physical therapists and occupational therapists to help with his movements and stretching.
Since we received the diagnosis of HIE, an EEG was performed to see if Colton was having seizures that we didn't know about. This was done in the afternoon. The test needed to be read by a neurologist. This is Colton being hooked up to the EEG machine.
A PICC line (a longer, more permanent IV) was attempted to be placed on Tuesday as well so we could get rid of the umbilical IVs, but Colton didn't cooperate and let the line thread to where it needed to be. Since we needed to be able to get the umbilical IVs out, we gave consent for a pediatric surgeon to place a similar line called a CVL (central venous line).
We were able to leave the hospital for a couple of hours while the EEG was being done and the PICC line was attempted. It was nice to be able to go home for a little bit, but we missed our boy too.
Wednesday, December 10th was a very busy day for Colton. Starting in the morning, Colton had visitors from physical therapy and occupational therapy. The physical therapist worked on his mobility in his feet and stretching. She also showed us some exercises that we could do with each of his feedings to get him more limber and stretched out. We had a special person come and teach us a special form of massage called lymphadema therapy. This was supposed to help with all of the swelling that Colton had. To do this requires a very light touch and circle motions to help move the fluid through little tiny vessels to where Colton's body can get rid of the fluid. It worked wonderfully. The swelling itself went down quite quickly (with the help of the the massage and some doses of lasix :) ). We are doing this therapy once a day for now to see if we can keep the swelling down. So far it seems to be working.
Right after that was done, the occupational therapist came and made some soft splints for his hands. Colton's thumbs did not behave like they were supposed to. They stay on for 3 hours and then come off for 3 hours. We've noticed that when they are off his thumbs stay out quite a bit more.
Another big deal today was Colton's first bath! He hated it!
We tried to switch the mode on his ventilator to something called NAVA to let him breathe more on his own and at his own pace. He loved it. However....
In the afternoon, the pediatric surgeon came and put in the CVL. Prior to the procedure, Colton was given a dose of fentanyl for pain. Oh boy! The one dose of fentanyl knocked him for a loop. Once he got the fentanyl he was no longer breathing on his own and he was letting the ventilator do all of the work. They had to switch the mode back on the ventilator to the one that breathed for him. He was in that mode for the night. He wasn't breathing over the ventilator.
Right after the CVL was done the neurologist Dr. K. came in to see Colton. She gave us results of the EEG... no seizures! She had a hard time seeing that he was being able to move now as the fentanyl made him very sleepy. She seemed to think that the HIE wasn't the culprit of his hypotonia. However she really wasn't able to give us an answer for the hypotonia. She did however suggest that we get a MRI of his spine to make sure everything was structurally ok. She suggested the same for his heart as well. Those were ordered for Thursday.
We were also able to start him back on feedings. He started getting just 3ml every 3 hours to see how he tolerated them. He had a few times when he had a lot left in his belly and they had to get rid of what was left and give him new milk.
Thursday, December 11th was another busy day. With his morning blood gas, they discovered that he wasn't getting enough support on the ventilator and that his right upper lobe of his lungs wasn't exchanging oxygen again. So the ventilator support went up and we watched his blood gases. In the afternoon he got another chest xray and the lobe had opened back up.
In the morning, Colton also got his ECHO (picture of his heart). We had to wait for the cardiologist (heart doctor) to read the pictures. That came back late in the evening. Colton currently has a small ASD or atrial septal defect. ( ASD ) Eventually this should close on its own. So, essentially nothing to worry about! It's one of the first pieces of good news we got today!
We left around lunch time to go home and take showers and do some laundry. When we got back to the hospital Colton was down getting his 2nd MRI, this one was for his spine. The results were back even before he came back from the test. Normal!!! 2nd piece of good news!
Feedings were going a little bit better, but he was still having quite a bit left in his belly when it was checked before each feeding. The decision was made to just keep feeding him regardless of what was left unless he seemed to be having problems with digesting it. Well, it worked. Throughout the day he was able to digest more and more of his feeds.
Colton was also started on phototherapy today as well. His bilirubin was too high. This is a condition called jaundice. Most babies get jaundice. The phototherapy is a way to breakdown the bilirubin. He gets to pretend he is at the beach!
Friday, December 12th is a good day! This morning his blood gas showed that he was getting way too much support on the ventilator. His settings were weaned pretty steadily over the morning and he was able to be switched back to NAVA in the afternoon. This too was weaned over the afternoon. He is breathing mostly on his own!
Feedings are going well enough that we were able to increase them this morning and he is up to 5 ml every 3 hours. Colton still had a few times when what was left was a lot but we are still feeding him. Part of the problem with his feeds was that he wasn't pooping. He was given a suppository to make him poop... and poop he did! Yes, we are excited about poop!
We both also were able to "kangaroo" with Colton today. Here is a link to Kangaroo Care. But here are pictures!
And now you are caught up! We are forever grateful for the thoughts and prayers for Colton.
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