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.

9/11

8 years ago today was my first day of clinical in nursing school. We were getting a tour of the nursing home when the world trade center was hit. It seems so long ago.
Gabe had his scope and surgery today. It was so hard handing him over to the surgical nurse. ENT and Pulmonary were pretty quick. They came and talked to us about what they found. Everything looked pretty good. The only abnormality that they noticed was that they saw some swollen tissue above the larynx. This tissue could be excessive due to inflammation from stomach acid related to reflux or be floppy tissue from Down Syndrome. The hope is that the reflux will go away with the nissen and the inflammation will go away and his oxygen saturations will improve. If this does not happen, they may need to surgically remove the extra tissue and worst situation do a trach (really hoping no trach). They are leaning towards this being a reflux issue. They did take a sample from the lung tissue. It will be sent to the lab. If it has fat in it, they will know it was from aspirated formula. The results should be back next week. The Gtube and nissen went well. I forgot how big the incision is. A nissen is when they wrap the top part of the stomach around the esophagus sort of creating a one way valve so food can come in, but can't come up, preventing reflux. A Gtube is a tube inserted into his abdomen directly into the stomach to feed. Gabe is intibated and on a ventilator. They are hoping to extibate tomorrow morning. The vent will just give him time to rest and heal without having to work to breath and keep his airway fully open.
The sleep study earlier this week showed pretty severe apnea and some lung tissue trauma. The lung tissue could be a result of aspiration. The apnea could be from the floppy airway related to the swollen tissue. He will most likely be on oxygen or CPAP when we eventually go home. The plan is to be here at least another week. I know these pictures are pretty sad to look at, but I'm in ICU with him now and this is how the poor guy looks. I'm happy we made it through today and hoping the Gtube/nissen will resolve his airway problems...here's to staying positive.

funny pictures

The first pic is when Gabe was screeming when they were hooking him up to the leads for the sleep study. It's awful to laugh at a crying picture of my baby, but the Happy shirt makes this photo. The second pic is funny b/c Gabe literally fell asleep in this position with Justin holding him...too cute.

yawn

Gabe had a sleep study last night. Poor little guy had a million wires attached to him. They should have the results by tomorrow. The ENT and Pulmonary scopes are scheduled for friday. They'll also be doing the Gtube then. Everyone think good thoughts at 10am on Friday.

Easy like Sunday morning

Gabe is back on some Oxygen b/c his oxygen saturation levels were dropping into the 70's to low 80's and the docs said we might as well turn it on to make him more comfortable till the scope next week. Other than that, it's just a waiting game. Gabe receiving sedation for the first time with his poor little heart is scary, but I guess we need results or else we'll be here forever. Check out the cute pics!