The big day!

I had a mini meltdown during rounds this morning. I just got so frustrated with Pulmonary and Cardiology not talking to each other. I cried alot. I think it was my first test in advocating for the little guy. They finally arranged for a meeting with everyone today and the decision was made to repair Gabe's little heart next week. That's right! The big heart surgery next week....I think mommy needs a shot of tequilla to calm down. He does have lung disease due to the pulmonary hypertension and fluctuating oxygen saturations. They plan to do a high resolution CT when Gabe is intibated before surgery to get a clearer picture of the extent. They are expecting his recovery to be longer than the typical AV Canal. After the heart is repaired, they'll begin to look at his airway issues and see how they are affecting his oxygenation. They will be deciding soon who will be doing the surgery and the exact day. We'll meet with the surgeons this week. Everyone think good thoughts!

Side note* Children's implemented visitor restrictions due to cold/flu season. No more than 2 people in a room and limited to Caregivers only. I'll keep the pictures and updates coming though so everyone knows how he looks and how things are going,

lazy weekend

Pulmonary came by and talked to Justin and I yesterday about some options in treating Gabe's tracheo malacia. The first option is to use forced air to keep the floppy airway open. This can be done with high flow air through a nasal canual or CPAP. Only problem is, you can't go home on high flow and the smallest CPAP device they make for home use is for 6 month olds, and it's not a guarantee to work. The second option is a surgical procedure (very long name supra glota plasty something or other) which basically means they would scrape away the tissue that keeps collapsing in his airway. A potential problem with this is that it only works when the collapse of the airway is in a specific part or if collapses a certain way. The doctors will be reviewing his scope to see if he is a candidate for this. The third option is a trach...we all know how I feel about those. Cardiology, Cards Surgery and Pulm are all going to talk either tomorrow or Tuesday to figure out if his heart should be fixed first or his airway. What a rollercoaster all this is. It's been pretty quiet around here this weekend. Gabe enjoyed the Bengals game today much more than last week's game.

Even though we're still at the hospital...

I'll still smile a little bit.

We were so close...

We were so close at going home and then Gabe decided to misbehave. His oxygen saturations are all over the place. They want him to be between 85-95% and with his tracheomalacia, he's all over the place. He was in the 90's on 1/4 a liter, so we turned him down to 1/8 a liter. He then stayed in the upper 80's so we turned him off. He then dropped to the 60's about 5 minutes later. He was put back on 1/4 a liter and came up to the 80's and then he dropped to the 50's right when they were rounding. They put him up to 1/2 liter and he came back to the 80's. He's still on 1/2 a liter and he's 94%. He makes no sense. The biggest concern with sending him home is that we can't be titrating oxygen all the time. I could do this if I have to, but I'm suppose to be his mom, not his nurse and other people who watch him would not be able to or should do this. So because they cannot give us a set amount to program his oxygen tank to, we cannot go home. Pulmonary will be coming by again. They may move up the sleep study to mid next week. I think it's really just time to fix his heart....so does the Cardiologist on service. They were suppose to discuss this today, but because his Cardiologist is out of town, it will be discussed next week with the surgeons.

We might go home tomorrow!

Gabe is currently off the mixer and on 100% oxygen at 1/4-1/8 a liter. They drew labs to check his Co2 last night before he went to bed and this morning when he woke up. This indicates how hard his lungs are working to breathe. They want the number to be below 50 optimally. He was 56.6 before sleeping and 50 after sleeping. While these numbers are not ideal and indicate some pulmonary issues related to his airway, it does mean that he is sleeping safetly at night on the oxygen. We are trying to ween him off oxygen during the day. Feeds are still going well. We will have to do continuous feeds for 2 weeks before they start giving him a window. We will follow up with surgery in 2 weeks. Home Health is coming today to go over the oxygen tank and portable oxygen and the feeding pump. They just did another ECHO to check on his ventricular function again and will be discussing when to do heart surgery tomorrow. He's still pulling alot with his lungs, but we will follow up with Pulmonary, have an outpatient sleep study on Oct.1, and address the tracheomalacia after heart surgery if needed. I can't wait to bring him home..even if it does make me slightly nervous. We need to feel like a normal family for a couple weeks before heart surgery. I don't have a camera right now, but I'll post pictures later.

When are we getting out of here?

...I wish I knew. I feel like I'm getting lost with the ENT and Pulmonary consults. Pulmonary were not able to round on Gabe till 6:30pm. I was at home b/c I had a massive headache and needed a break. My mom was at the hospital and gave them the questions I had written down. They called me back at 8:30pm. Justin was at the hospital at that time, but I guess they weren't on our floor when they returned the call. I had all sorts of questions and their answers were a little confusing to me. It's hard to differentiate what is Pulm and what is ENT. Basically, Gabe has tracheomalacia (floppy airway). He also has swollen tissue from the reflux. They are waiting to see the swelling go away to see if they need to do anything with the floppy airway. Swelling takes 2-3 weeks to go away and I don't want to be here that long. They will probably do a repeat sleep study with oxygen or CPAP to see what works for him at night. We will go home with continuous feeds that we will eventually be able to window and transition to bolus feeds in 2-3 weeks. They just rounded on him and our goals are to get him off oxygen during the day, oxygen or CPAP at night and tollerate feedings while gaining weight. They are going to present him at the Cardiology conference on Friday and schedule his surgery for 4-8 weeks from now.

Even though we have been in the hospital 38 of the last 75 days, we are doing okay. On Monday, Child Life brought over a family to meet Gabe (with our permission). Their child was born in July with a single chambered heart. He has already had 2 surgeries and will be getting his third in November. They have been here for 90 days and are living at Ronald McDonald House...puts life in perspective.

Gabe is extubated!

Gabe got lots of Fentanyl last night b/c the tube in his mouth kept making him mad. He woke up slowly from the medication this morning. They warned me when they extubate that he might lose his color, drop his sats and then hopefully rebound and they would work on him if they need to. I was mentally and emotionally prepared. Gabe did great! His color stayed good and his sats were above 78% the whole time. What a trooper! This afternoon, he had his eyes open and was looking at us. They plan to start pedialyte thru the feeding tube tomorrow and see how he tolerates it. They have him on high flow air which has the same type of effect as CPAP in terms of keeping the airway opened up. They'll try to ween him off the high flow and onto a small amount of oxygen tonight. Hopefully the inflammed tissue in his throat will go down and his airway will open up now that the reflux is hopefully gone. Think NO TRACH thoughts!

Even though this has been a difficult time, we are so lucky. Look at the cute face staring back at me!...makes mom's heart melt.