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.

set back

They pushed Gabe's extubation back till today due to his heavy secretions. They tried this morning and it was not successful and they had to reintubate. His trachea was so swollen he couldn't get air through. Found out they put a 3.5 tube down during surgery when he measured more of a 3.0 and that caused his trachea to swell. This along with the tracheomalacia was a bad combination and he couldn't ventilate. He turned purple and desated. Codes are not fun. they were able to easily reintubate and he's back on the ventilator now. The good news is his lungs are fine and his heart is fine. Now we just have the trachea and larynx to work with. They are going to do another scope tomorrow to check out the swelling. They may put in a balloon and inflate it to expand some of the tissue. They will also suck out all the secrections and scrape away some extra tissue. They are going to give him steroids to help with the swelling and hopefully try to re-extubate mid week. What a morning....

Post op day 7

Gabe is progressing slowly. The biggest set back over the past few days has been fevers. They have done cultures and found that a small amount of Klebsiella is growing in his ET tube. They are giving him antibiotics. Gabe has done well on his CPAP trials today and they are hoping to extubate tomorrow. His CO2 is a little high. They're trying to keep his bicarb in check while giving him the right amount of diuretics. They have weened him off nitric oxide, epinephrine, Nipride, TPN/Lipids, and turned down his Milrinone, Fentanyl and Versed. He is getting fed through his Gtube again. His oxygen saturations stay high overall unless he needs to be suctioned or is really mad and clamps down. His secretions are disgustingly thick. His ventricles are looking better, even without the cardiac meds which is reassuring. He cries sometimes and it's pitiful b/c you see his crying face, but he's not making any sound b/c of the ventilator. Hopefully tomorrow I'll get to hold him after he's extubated. I really hope extubation goes well tomorrow.

Because it is National Down Syndrome Awareness Month, here are some facts about Down Syndrome:
Down Syndrome (Trisomy 21) occurs in 1 out of 733 births.

There are more than 400,000 people living with Down syndrome in the United States

Down syndrome occurs in people of all races and economic levels

Down syndrome happens at conception, usually not hereditary and has nothing to do with environmental factors or parents' activities before or during pregnancy

The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age

People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory, eye, and ear problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now very treatable and over 50% of individuals with Down Syndrome live into their 50's and much older.

I don't mean to go off on a rant about being politically correct, but this one is important to me. It is not polite to refer to these individuals as Down's babies. Down Syndrome does not define them. They are babies with Down Syndrome. Also, please do not use the word "retarded". It is hurtful. When we first found out the Gabe was going to be a baby with Down Syndrome, one of my biggest fears was what would I say if someone made fun of him. What would I say if someone called him retarded. Hopefully if people know that this is not a nice word, I won't have to.