This is a no trach zone

Pulmonary came by today and talked about doing a joint scope with ENT on Friday. They mentioned doing another sleep study since Gabe's first study showed such significant apnea. He then mentioned that a trach is still not out of the picture. That was kind of a shock to me considering his oxygen saturations stay in the upper 90's to 100% on 1/8 liter of oxygen and he doesn't desat. We're going to talk to the Pulmonary attending again tomorrow to ask more questions about possiblities such as CPAP nasal prongs or mask. We'll know more after the scope and second sleep study. I was hoping to get out of here this weekend, but now it is definitely going to be next week....if he doesn't need a trach, or it could be longer...sigh.

In happier news, Gabe has been playful and acting more like himself all day. He's so cute and is cooing more and grasping rattles more....so fun. Here are some pics of Gabe playing on Daddy's lap.

Hopefully home next week!

Gabe's diarrhea is getting alittle better. It's not as much and not as frequent. He no longer has a fever and all his cultures are negative. The best thing is that he's acting more himself. He's alot less fussy and being very cute this morning. His electrolytes and WBC count are all looking much better. They'll restart his Lasix today. They are also going to start windowing him with his feeds and seeing how he does off oxygen (he really likes 1/8 liter). They are also going to talk to Pulmonary to see if they want to do another sleep study before we go since Gabe has pretty significant apnea. He also has another MLMB scope on Friday to make sure his airway is looking okay. We're getting there...the end is in sight. Hopefully next week. I really want to be home for Halloween...Gabe is going to be a monkey.

yuck

Gabe has diarrhea.... bad diarrhea. He spiked a temp overnight Saturday and the diarrhea started Sunday morning and is still going on. They've sent stool cultures and put him on a broad antibiotic. Poor little guy is so fussy and uncomfortable. He started getting dehydrated last night and I asked about IV fluids. They kept saying they didn't want to load him with fluid and flood his lungs according to the fellow. Only thing is his heart is repaired, so this shouldn't happen anymore. I asked for them to round on him first this morning so I could ask the Attending directly to start IVF's. They gave him a bolus and his heart rate has come down some and he looks much more comfortable now. Poor little man. He needs to get out of the hospital to get away from all the germs. I swear if it's not one thing, it's another.

Happy mama

Gabe is doing really well. He is off high flow oxygen and now on just 1/8 liter of regular oxygen. He's been pretty cranky today since he is adjusting to being off all his sedation drugs. We are out of ICU and now on cardiac step down. It's amazing how things can turn around in one week's time.

post op day 14

Gabe is extubated! It's been about an hour and a half and he's doing pretty well on the high flow oxygen. He was wide awake and ready when they came in to pull the tube. He was almost smiling. They pulled the tube, he coughed a couple times and that was it....totally different picture from Sunday. They'll watch him closely today. They took his catheter out. They'll take the right atrial line out tomorrow. That means he'll just have monitors, tube feeds, PICC line and an arterial line and I"ll finally get to hold him. He seems so happy now. We'll still have to monitor his work of breathing and see what (if anything) needs to be done with the tracheomalacia. We need to get him off high flow oxygen. At least he's off the ventilator now.

Hoping for Thursday

Sorry to vent earlier. I'm feeling alittle better now. Gabe is awake and seems comfortable so they haven't had to sedate him much. He was looking at me and looking at his lights and it reminded me how cute he was. This is the most awake he's been in 12 days. Little guy knows how to make mom feel better.

63 out of the past 101 days in the hospital (43 straight)

The scope today showed that Gabe's airway is really swollen and raw down to the cartilidge. The ENT doc said that swelling of this extent is related to the intubation tube being too large. This is extremely frustrating. We voiced our concerns to the surgeon and again to the Cardiology Attending. The Attending said that he thinks they chose to use a 3.5 instead of a 3.0 endotracheal tube b/c they wanted to make sure it didn't have a leak and be too small and lead to an unstable airway immediately after heart surgery. I personally think that is a little far fetched since a 3.0 gave him a perfectly solid fit 2 weeks earlier for his Gtube surgery and he had hardly grown between then and heart surgery. I'm having a hard time with it. I'm really hoping someone's error in judgement doesn't lead to a long term consequence. I'm sure they meant well in making the decision of a larger tube in a floppier airway, but it was the wrong one for my son. In the mean time, they're giving him steroids and antibiotics in hopes to extubate on Thursday. He has a 2.5 ET tube in. They purposely wanted it to be a little smaller so it's not rubbing up against the raw tissue around it. The down side to a smaller tube is you can hear a hoarse cry when he's upset. Hopefully the swelling will be down for Thursday. I don't know if I"ll be able to be in the room for it this time. I'm so sick of Gabe being sick.