Wednesday, September 30, 2009

13 more hours



I know God will not give me anything I can't handle. I just wish He didn't trust me so much.



-Mother Teresa

Tuesday, September 29, 2009

2 more days




We are meeting with the surgeon tomorrow to go over the surgery, recovery, and risks. We've known about the heart surgery for over 5 months, but it's still so hard. Handing him over to the surgeons on Thursday may just be the hardest thing I'll ever have to do. The big "what if" just hangs over your head....especially when babies in rooms all around us seem to be disappearing. I keep telling myself that he just has to be okay...even with all his complications and crazy quirks. Too many people are hoping and praying for him, he just has to be a success story. The world needs his cuteness! Everyone think good thoughts on Thursday!

Friday, September 25, 2009

6 more days




Just a little shout out to my husband who has been making me smile for 5 years now. He remains positive when I'm feeling negative and he stays hopeful when I feel hopeless. He has made me laugh through all this. Sometimes when the Cardiology fellow walks by, he hums "For He's the Jolly Good Fellow" and it cracks me up. Check out the picture of the night we met...the only picture we have when we're not standing beside each other.

Thursday, September 24, 2009

1 week

Even though we had some Gtube troubles last night, Gabe is continuing to do well. He's bulking up with the continuous feeds and is breathing well with the high flow oxygen. They did draw some labs and his TSH (thyroid stimulating hormone) level was elevated. They are waiting for addtional thyroid labs to come back, but they went ahead and started him on medication for it. Down Syndrome babies are at higher risk for thyroid disease. We'll see if the other labs come back confirming the diagnosis. Gabe is in a very good mood today...too cute. I'll take pictures later. Surgery is officially confirmed for next Thursday, Oct.1 with Dr.Manning.

Tuesday, September 22, 2009

Waiting for the inevitable











They moved us back to CICU so Gabe could be on high flow oxygen to help with the tracheo malasia and give his lungs a little rest till surgery next week. We did some preop things today like get a PICC, get labs drawn, check to make sure he doesn't have ORSA, etc. They also gave him some blood b/c his hematocrit and hemaglobin levels were alittle off...he looked a little pale. The CICU attending came and talked to me along with Pulmonary. She said that they are going to biopsy his lung tissue during the heart surgery to get idea of the extent of any lung damage, if any, from the pulmonary hypertension and edema. She explained how Gabe is quite the conundrum b/c his oxygen saturations have always been all over the place...it's like he was born with shunting to his lungs and pulmonary hypertension when it's usually a gradual process. She explained that she is anticipating 3 potential outcomes after his surgery. 1. They are unable to extubate due to his airway and have to do a trach and potentially a vent at night. 2. They extubate, but his pulmonary status isn't up to par. They give it a couple weeks and then do a trach till his lungs heal. 3. He is extubated and shows gradual improvement and pulmonary addresses any tracheomalasia issues at a later date and his heart function is normal. Gabe is in the drivers seat and we'll have to see where he takes us. In the mean time, we are trying to enjoy this week with him and play with him as much as possible. Check out the pictures of Gabe and I working on his neck muscles.

Monday, September 21, 2009

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,

Sunday, September 20, 2009

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.

Friday, September 18, 2009

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.

Thursday, September 17, 2009

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.

Wednesday, September 16, 2009

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.

Saturday, September 12, 2009

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.

Friday, September 11, 2009

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.

Wednesday, September 9, 2009

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.

Sunday, September 6, 2009

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!

Saturday, September 5, 2009

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.

Wednesday, September 2, 2009

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