Wednesday, May 7, 2008

Home, hospital again, home...

So we finally had our little turkey home. He was discharged with all kinds of instructions and follow up. He was discharged with a prescription for vitamin K (very hard to find a pharmacy that does that), and a variety of follow up appointments. First the nurse, the day after he came home, then the pediatrician later that week, the surgeon (to consult about the hernia from his incision when he had the bowel perf and drains were inserted, but now intestines squished out), the vision clinic (cause his eyes had become an issue for ROP the last couple weeks), the nephrology clinic for his kidneys and the perinatal clinic (but not until he was a bit older). 

Well, the nurse was great. She weighed him, checked him over and helped with things like breast feeding and such. The pediatrician was great and come to think of it, it was maybe her that referred him to surgery. The eye appointment was okay. We were at a private clinic, and they were worse again, so she wanted them checked again in a week. Since she'd be gone she referred us to the vision clinic at Children's, just to be safe. The surgeon was okay, it was basically, keep an eye on it, and if it changes colour or if the baby seems in distress, then call to have the surgery. He didn't want to put him under until he was bigger. And nephrology was good, but it was more of a watch and see, with the occasional ultrasound to check on how things were progressing. 

So, week two, we still have the nurse coming every few days, and then on Wednesday we went to the vision clinic at the Children's Hospital (this was when it was still the old Children's on Richmond Road). Well, the eye clinic is always tough. They put two sets of drops in the baby's eyes and then you wait for about half an hour until the pupils are dilated enough for the doctor to see. Then, someone holds the baby, while the doctor pries the baby's eye open with a special tool, so she can have a real look at what's going on. They are looking to see how the vessels are growing and making sure that the retina doesn't detach and cause blindness. Well, towards the end of the hospital stay Sebastian's eyes started getting worse. I went to this appointment with Sebastian, and within 10 seconds of looking at him, she said he needed surgery, in the next two days. Of course this made me cry. We'd only had Sebastian home 10 days and already he'd be readmitted to the hospital. So, we got a few details and procedures and then asked about having the hernia operation at the same time. I mean, if he was going under regardless, we might as well get it done too. The opthamologist was fine with it, so we had to go and check on the surgeon. We went back to the surgery area, asked there, and had to wait a bit (obviously since we had no appointment). Eventually we talked to him, he was a bit doom and gloom, and was pointing out all the worst case scenarios of doing the two surgeries together. Since the eye doctor was fine with it though, we agreed to do both.

Thursday, we waited but there were no beds available, so we were pushed back to Friday. On Friday, we showed up at the hospital. We got Sebastian admitted. He had a room on one of the lettered wings until before the surgery. We hung around. At one point the nurse encouraged us to leave and go get coffees or something, so we left, and while we were gone, they called and said it was time and Sebastian was going in. We hurried back and were able to carry him to the surgery floor. We had someone with us, and Sebastian was dressed in green hospital scrubs. We went into an elevator that had stuffed toys hanging inside. I nearly lost it. I suddenly got so scared again. The nurse came out to talk to us, she had all sorts of neat little badges and toys (obviously for the older kids). Everyone was so warm and caring, but never the less I was so afraid. Both the surgeon and eye doctor spoke with us beforehand to let us know what was going on, and what would be happening. Eventually it was time for them to take Sebastian for the surgery. I know I cried. I was so scared to give him away like that, knowing he would be knocked out and put on a ventilator again. It had taken so long to get him off it in the first place, I was truly fearful it would be long again. 

Well, we waited around while the surgeries happened. Each doctor came to speak to us and let us know that things went well. Sebastian was in post surgery and would be headed off to the ICU shortly after that. We were told to head towards ICU and when he was settled, we could see him again. PICU at the Children's is a closed off unit. You actually have to pick up a telephone and have a nurse let you in. We did this, and then waited in the waiting room for Sebastian to arrive. I think it was about 20 minutes later, he was brought in. He was off the ventilator, but still on oxygen. They got him settled and we got to visit again. He was on pain medication and a variety of eye drops. He was not settling really well, so they had to keep the oxygen on. Slowly, he started to stabilize better, so we eventually could leave. I got to learn about all the pumping rooms in the Children's while I was there!! We went home for the night. But called to check on him before we went to bed. 

The next day, we spent most of the day at the hospital. He was getting better and by the afternoon I think, he was off oxygen again (huge sigh of relief!!). We were told that if things kept going as they were, that we'd be taking him home the next day, Sunday. We stayed for part of the evening and then left to have supper with Chris and Jeff. 

Sunday was special. Sunday was Father's Day. Sunday was the day that Sebastian came home for good. Again, he was given discharge instructions. Prescriptions for 3 different kind of eyedrops, and more appointments to follow up from the surgeries. 

Once we got him home this time, we never looked back. We have been fortunate enough to not need the use of overnight hospital stays again. He's continued to be followed by the clinics but for the most part is doing really good. Nephrology plans to discharge him after one more good check in the fall. Surgery hasn't seen him again since the followup after that. Vision clinic still sees Sebastian every 6 months (however, this is much better than every week, which it was for a few months!!). The opthamologist thought he'd have glasses by now (very common for preemies who have had ROP eye surgery), however, he's 2 and so far so good still. He had a fantastic year the first winter.

This past winter has been a bit of a challenge for Sebastian. He got a nasty flu in December (despite having the flu shot of course!). Then caught a cold. Then, he had an ear infection. Then he got another cold. Then he got another ear infection. Then he got another cold. Then he got a lung infection (imagine sticking your child in a tube so he can't move for the x-ray...not fun at all!!). And he's continued to battle colds since then. This is his preemie lungs not being able to fight off stuff as well as a normal child. It's frustrating, because there is nothing we can really do to help him. He has inhalers that he takes now, in an effort to help his breathing. It's been a tough winter, but he's doing pretty good now (after like 4 months of almost a constant cold, grrrrrr). 

We did the Mother's Day run with him last year. And on Sunday we're doing it again. This year, Sebastian also gets to enter the little legs race. It will be his second race (he had one in January). Forzani's is the group that puts on the race, and for the 3rd year in a row, the money they raise is going to support Neonatal Intensive Care. They are buying a variety of equipment for the unit. We will forever be grateful for the care that Sebastian received at Foothills NICU, Peter Lougheed Special Care, and Children's Hospital PICU. 

Sebastian is now 2, and if you watch him running around and being this incredibly energetic toddler, you'd never know that the first 2 1/2 weeks of his life, we wondered if we'd ever see him make out of the hospital alive. What they do for babies in Neonatal Intensive Care is nothing short of amazing. Really. Truly. Completely. 

So, there is Sebastian's story. The story of our family. It's been an incredible journey so far, with some pretty scary bumps in the road. But, all I have to do is get a "huggy" from my little boy, and I know that it has all been worth it. So, that's my look back, now I'll continue on blogging, but with stuff that we're doing now. Thanks for reading, and feel free to leave any comments. It's always nice to see who reads!!

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