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!

soooo big

Gabe and I had a discussion at about 4am this morning. I was rocking him and telling him all the reasons why he needed to get better so we could go home. I told him about his fish cave (baby einstein gym), animal mobile, walks in the stroller, evenings on the deck, etc....I hope it works. The impedence study didn't really show a correlation between his reflux and oxygen saturations. I don't really buy it though and neither does the doctor. They put an NJ in and he seems much more comfortable. Pulmonary thinks he sounds a little course in his lung bases and think his chest xray looks viral. ENT wants to rule out floppy airway as the potential reason for the oxygen desaturations. They will be doing a double scope together next weeks to check it all out. Sedation makes me a little nervous, but I know they need all the info they can get. He is still requiring 1/8 to 1/4L of oxygen. We tried no oxygen yesterday and he lasted about 3 hours before he started hanging out at 70%. They may also do a sleep study next week to look at apnea. As far as the blood in his stool goes, GI did a barium enema to rule out Hirschprungs (sp?). It came back inconclusive. Since switching to the Alimentum, Gabe hasn't really had any blood in his stools. They're leaning towards it being just a milk protein sensitivity which babies often outgrow. I can deal with that. The doc told me that if after a week, I notice blood in his stool again, to call him and they'll do a biopsy of his GI tract if necessary. It's kind of just a waiting game to collect as much data as possible. The weekend will probably be slow.
Justin and I met with the First Steps Coordinator on Thursday. I also met the director of the Thomas Center for Down Syndrome yesterday. I felt better after talking to both of them. I know this is a hard stretch for us and they say the first year is the most difficult. It's good to know that Gabe will be in good hands with these services.
Gabe is so close to smiling. He loves to play "So Big"...it cracks me up.

Picture from Katie's wedding courtesy of Erin...8/22/09

Lots of work up

Gabe is being worked up for a variety of potential diagnosis. He is still requiring oxygen and what we suspect is reflux and aspiration is beginning to take a toll on his pulmonary function. They did an impedence probe study to look at the reflux issue and the results are pending. Pulmonary and ENT are involved to look at his airway. Sometimes in Down's Syndrome their trachea can close off related to poor muscle tone. They may do a bronchoscopy and sleep study if they think this is an issue after the reflux is addressed. This morning, we also noticed blood in Gabe's stool for the second time. GI is now consulting to look at what could potentially be causing feeding intolerance and blood in his stool. They will need to rule out Hirschprung's and food allergies. They pulled his NG tube and put in an NJ tube today. An NJ tube is inserted thru the nose down to the jejunum part of the intestines. With the tube being inserted this far, he should not reflux. The down side is, feeds have to be continuous from a pump. We are hoping to be able to offer Gabe 10ml of formula from a bottle a couple times a day. These tastes along with a pacifier will hopefully allow him to continue to use those facial muscles that will be so important for his speech later on even though he will be getting continuous feeds. They are also switching his formula to a milk protein free alimentum in case of allergy. Overall he had a good day. He seems comfortable and was awake, alert and playful. We have to stay patient while we're collecting all this information. Thank goodness we are at a great Children's Hospital and live so close. Special thanks to Kelly for organizing the Buddy Walk in Gabe's honor. https://www.syssolutions.com/CincinnatiWalk/Main/MyTeam.aspx?Reset=Y