Monday, August 31, 2009

Gabe just can't stay away from his second home.

We're back in the hospital. Gabe looked great last Wed. and Cardiology said they would see us in 2 weeks. On Thursday, he started having some upper airway congestion. The Pediatrician told me he may sound congested from time to time due to his narrow nasal passages. The home health nurse came that evening and said he seemed fine. On Saturday I started getting a little concerned. His retractions became a little more pronounced. His lungs were clear, no temperature, good color, good cap refill and he was playful. He started nasal flaring Saturday night and I started to worry. I thought I'd watch him close and maybe call Monday. On Sunday morning he started looking pale. Still no temperature, typical intake and output, lungs clear, labored breathing continued, nasal flaring had stopped. I talked to some other nurse's to get their opinion b/c sometimes my mom judgement clouds my nursing judgement. He continued to act himself, so I decided to keep watching him close and call Cardiology first thing Monday morning. Sunday evening during feeding, he looked really red faced. When we were securing the tape on his NG tube, he started crying really hard and looked a little purple-ish around his lips. That was the final straw and we brought him to the ED. When we got here, he was looking great and his O2 sat was in the 90's. I think Justin (and myself) thought I over reacted again. As they were getting ready to discharge us, Gabe was sucking on his pacifier and desated to the 70's. They decided to watch him during a feeding and he desated to the 60's. That bought us an admission. Since then, he's been on oxygen. He's on 3/4 a liter and is holding steady in the upper 80's to 90's. They're trying to ween him, but haven't had much luck yet. I'm glad I stayed on top of it and caught it pretty early. I wonder if he had a brief desat 2 weeks ago when I rushed him to the ED and he ended up being fine. They did a nasal swab to see if he has a virus. I don't know how he could have a virus...we don't take him anywhere and we wash our hands like crazy. They're having speech work with us and making notes if he desats with feeding or refluxing to see if there may be a slight aspiration component that didn't show on the video swallow study. They did another Echo to look at his pulmonary hypertension and left ventricular shunting. We're waiting for all these results to come back. Gabe seems very worn out today. He still looks pale. He desated to the 60's today while feeding, turned a little dusky and then recovered, and that was with 3/4 liter O2. Poor little guy. He looked great 5 days ago and things were on the up and up. 2 steps forward...5 steps backwards...this is getting old.

Wednesday, August 26, 2009

ugh...I'm tired

Doctor's visits are exhausting. I went to my OB today and got clearance for normal activity. I now no longer have any excuses for not mastering the hills of Fort Wright with a stroller. She also was nice enough to waive the cost of her cord blood collection since medical bills are expensive (even if you're only paying co-pays and meds for now). I then rushed to Gabe's cardiology appointment. The fluid accumulation settling around his liver has improved some thanks to diuretics. His work of breathing is a little better, and his oxygen saturations are in the lower 90's instead of the high 80's...these are all good things. He still has really bad refulx, so they gave me a Rx for Reglan...here's to hoping. His weight was up a little bit and he's now at 8lbs 13oz. This isn't as much as they want, but at least it's up. I went out last night and exchanged my regular similac for Similac sensitive, only to realize when I tried it today that it has a gritty kind of texture when it is fortified to 26cal and it will not go thru a nipple or feeding tube. What a waste of $30...back to regular Similac. Hopefully Reglan works. They also drew some blood work to make sure Gabe's heart is perfusing enough oxygenated blood to his digestive track and other organs and that's not the reason for the vomiting. I hope the labs come back okay. The ventricles are still an issue. There is no good reason for their poor pump function other than that he is still recovering from whatever event he had at the beginning of the month. I'm the type of person that needs a good reason. If the ventricles would improve I feel like alot of my worry would be gone b/c they could then confidently do surgery without giving me a bunch of what if's and maybe's and we don't know's. All these unknowns are testing this worrier's strength. Gabe is crazy cute. He was a very good little boy for the docs today.

Sunday, August 23, 2009

long and overdue



So we've been home for over a week now. Gabe has his NG tube still. We are offering him 70ml in his bottle every three hours and whatever he doesn't take, we put down the tube. We went to the Cardiologist on Wed. His weight was up slightly, but they told us to up his feeds to 75ml per feeding b/c they want him to gain a little faster. They also made some medication adjustments. On Thursday, we went the the Ped. office. She thought he looked good. She reiterrated how sick he was and agreed with me that it would be a good idea not to take him out in really public areas b/c he CANNOT get sick. She also did not know why he got so sick so fast, but told me to go with my gut and if I'm ever worried, go to the ED. When we were at the pediatrician's office, Gabe threw up all over me which was odd for him. Throughout the day on Thurs., I also noticed he wasn't eating as well. Justin also changed a diaper that day that he thought had some blood in it. I didn't see it, but he thought it was definitely noticeable. Around dinner time, Gabe was not eating well. He seemed like he was in pain when I was giving his tube feed. He started refulxing some. When he does this, he kind of bears down and holds his breath to fight it. His face turned really red and he was crying unconsolably. When he finally stopped, he looked pale and kinda out of it. I called the pediatrician who we had just seen earlier that day and told her I was worried and she agreed with me that we should go to the ED. I called the Cardiologist on the way and he met us in the ED at Children's. Because we had made some medication changes the previous day, I was kinda worried about his potassium level and blood pressure. Of course when we get there, Gabe looked great and wanted to play and flirt with all the lovely nurses. I felt kinda silly, but I was glad that I knew he was all right. The Cardiologist didn't really have any good answers for the blood in his stool. He said if it happens again to let the Ped. know and it hasn't. Maybe he was just straining or something. As far as not tolerating the feedings well, he just said to cut the Lasix dose if we think he's getting dehydrated and continue to use refulx precautions and give the tube feeds very slowly. He also hinted at the idea that b/c Gabe is a pretty fragile little guy who leaves everyone scratching their head, they want to watch him closely and may be leaning towards surgery earlier than later. He also told me that he "misspoke" on Wed. when he told me the ECHO showed his vertricles were back to normal...they were actually the same as when we were discharged which is still not totally up to par. I was pretty upset at the doc for that. So, Gabe has still spit up from time to time. You can hear him refluxing with his feeds and you just hope he doesn't get sick. We're feeding him very slowly and then holding him upright afterwards. The whole process is taking about 60-90 minutes to ensure he keeps everything down. I know all babies spit up, but this is just new for him and he seems uncomfortable after feeds when he use to go into a food coma sleep. The dietitian is going to call me back tomorrow. Part of me wonders if he's Lactose sensitive, but it seems like we would have noticed something before now. Poor little guy. I hope so much his ventricles get back to baseline so he can be as strong as possible for this surgery. I'm starting to get really worried about the surgery. I feel like this last hospitalization was just a preview of what is to come. I need to stay more positive though. So, here are the positives: Gabe wants to smile so bad...he's so close...it's going to be so cute. Gabe is also sleeping much better at night. We are the one's waking him up to feed him. Katie's wedding was fun. I'm so glad I got to be a bridesmaid. I was worried I wouldn't be able to with everything going on with the baby. It was nice to feel like a girl again. Yay for Grandparents being able to help with Gabe and learning how to feed him and give him his medicines.

Sunday, August 16, 2009

We're home!

We were discharged Friday afternoon. There is still no good reason for the poor ventricular function. He looks so good clinically, they are thinking it corrected itself. Maybe it's a miracle. They are going to do another Echo in Cardiology clinic on Wed. Gabe still has the NG tube. We give him a bottle and whatever is left after he is done, we put down the tube. He has to take 70ml per feeding. The tape makes his poor little cheek so red. The home health nurse came by today and his weight is up and he looks good. Hopefully the medications and feeding tube will buy us some time before surgery to fatten the little guy up. He definitely has his days and nights confused, but that problem now seems minimal considering what we've been through. He's been very alert and playful lately which tells me he's feeling better. Gabe wants to smile so bad...he's close.

Wednesday, August 12, 2009

Giant leap forward!


Gabe is continuing to do well. His oxygen saturations continue to be in the 90's on room air and his respiratory rate is staying 40-60's. He has increased work of breathing only with feedings at this point. His color is good... some mottling, but no blue episodes. They were saying in rounds that he doesn't appear to be showing signs of heart failure anymore. So the big question is what happened last week? No one totally knows for sure, but here are some theories that have been bounced around. Gabe was stressed from something and his heart just couldn't take it causing him to work really hard to breath and have difficulty recovering. He may have been stressed from something viral, not being able to tolerate feeds due to poor pacing and reflux, or getting to the point where he required cardiac meds and went into distress quickly (even though this is not typical). Nothing he has shown has really been typical. The blood they drew looking into potential enzyme deficiencies is still pending so we're still waiting to see if there is another diagnosis out there, but b/c he is looking so good, they're thinking he has recovered and it just took him a long time to bounce back and there may be no other diagnosis. They are hoping we will be able to go home Friday or Saturday. He will still have a feeding tube. We tried giving him a bottle very slowly today and paced him every 4 sucks to catch his breath. Gabe can't suck and breathe at the same time, so he needs breaks from sucking to recover. He just took 2oz by mouth! They want him to have 70ml per feeding, so we're putting the rest down his feeding tube. Home Health will come to our house to check on the tube feedings. He will also stay on Captopril, Lasix, and Zantac once we go home. The docs are acting like the plan is back to where it was which is fatten him up as much as possible and aim for surgery around 4 months. Gabe is the most wide awake he's been in over a week. He's tracking with his eyes and playing and acting himself again. It's crazy to think how a week ago he was so sick and we were so scared.

Tuesday, August 11, 2009

The waiting game



We're still waiting on lab results to see if there is another diagnosis out there to explain Gabe's ventricles. The labs take awhile to run, so it's a waiting game right now. He did have a video swallow study today and did really well. He may have some reflux, but his palate, throat and esophagus all look really good when he swallows. They are spacing out his tube feeds and we may be able to offer him a bottle in the next couple days. Other than that, there are no changes. He looks good clinically, we are just hoping his Echo continues to show improvement with his ventricles. He slept all day today so of course he'll be awake all night. Thanks to Kelly, Tammy, and Andrea for the treats. I ran home just for a minute and must have missed you. We really appreciate everyone's support. Reading this blog is the best way to keep updated on what's going on. It's hard returning all the phone calls. If you don't hear from us, we apologize...it's been busy around here, but keep checking the blog.

Monday, August 10, 2009

1 step forward

Gabe's echo came back with some improvement today. His ventricles definitely still aren't where we want them to be, but they have improved some and I'll take it. They tested his adrenal glands and they are normal. They also sent some blood work looking at enzymes to give us more clues as to what's going in with the weak heart pump and they are still pending. They moved us out of CICU today and we are now on A6C. It's nice to be able to have visitors and food in the room again. Speech and OT also came by and tried some tastes and he was able to take 10ml by mouth before looking stressed and that is a big improvement from Friday. They'll probably do a swallow study and sleep study sometime this week while we're waiting for lab results. They will also probably do another echo at the end of the week and hope that it shows even more improvement.
I went to Lactation today and they gave me some herbal medicine to increase my milk supply. They also told me that I've lost alot of weight very quickly and need to eat more regularly and increase my protein. So, for those of you who have offered to make us food (cough cough...Rachel), I'm to the point where I will graciously accept.
Keep thinking good thoughts everyone...I hope we're on the right track. This is crazy rollercoaster and I'm ready to get off!

Saturday, August 8, 2009

Here I am crying out for mercy and calling out for Your help, so if You hear me I need a hero



Gabe is still in ICU. He has a feeding tube giving nutrition. He has a PICC line which is an IV catheter inserted near his heart to give him medicine. They have him on Captopril and Lasix. The valves in his heart are still leaking significantly. The more concerning issue continues to be his ventricles. The bottom half of his heart is not beating strong enough and this is something surgery would not correct. They won't even do the AV canal repair until his ventricles are working better. The medication they tried giving him was not really improving this function. The big question is why. All the doctors talked about him yesterday at a care conferenece and they all agreed that poor ventricular function to this extent is rare with AV canals and Down Syndrome. They think something else might be going on with the heart...something seperate causing poor ventricular function. They are going to draw a bunch of labs on Monday to look at all sorts of weird stuff to see if there is another diagnosis going on with the heart muscle itself. They may eventually do a cardiac cath or biopsy, but that's still a maybe. They will check another ECHO (ultrasound of the heart) next week to see if there are any improvements. Gabe looks pretty good and is still a cutie. He looks so good for having such a weak little heart. Thanks again for all the thoughts and prayers. I apologize for not answering my phone very often or returning calls. It's exhausting explaining everything and it's busy around here with lots of docs in and out. Justin and I are hangning in there. We've been sleeping at home since Gabe is stable and we're trying to take brakes from the hospital when Gabe is asleep and the doctors aren't coming in to talk to us in order to stay sane. We'll keep you posted on how everything goes.

Wednesday, August 5, 2009

update

We're still in Cardiac ICU. Gabe has shown some improvement over the last day or two. The big question is why is all of this happening so soon. He has pulmonary hypertension and leaky valves in his heart. The surgery could help with this some. More concerning are his ventricles. The bottom half of his heart is not pumping efficiently and we don't know why. They're trying a medly of medications to help with this. All of the stuff we're seeing is not typical of an AV canal. They usually have gradual work of the heart, not suddenly like Gabe. Speech and OT came by today and tried giving him a bottle. While his oxygen sats stayed high during the feeds, his work of breathing increased and he started turning mottled (kinda blotchy looking). They decided to put an NG tube in (feeding tube). They are also giving him some blood to help with his labs. They might do a cardiac cath to check on pulmonary hypertension to see best treatment. A care conference is planned for Friday to review all the information and see the best course of action. He is looking better, his monitor is alarming less, and he is getting nutrition now which are all positives. The Chaplain is working on getting a priest available to Baptize him here at the hospital in the next couple days. Thanks for all the prayers and positive thoughts.

Tuesday, August 4, 2009

Not good...


Cash went into congestive heart failure on Monday and was taken to the Emergency Room and then Cardiac ICU. At Children's they determined that he had a lot of leaking around his bad valve and that his ventricles were not pumping well. I left my trial and came up to Children's, and Michelle and I spent the night here last night. They are running a bunch of tests on him today, mostly trying to determine if they'll be able to hold off on the heart surgery as long as they want to. The odds on the heart surgery are very good at six months old, but at this age all the doctor would tell us is they're not very good and we'd cross that bridge if we came to it. Part of the problem is that they don't know what caused the failure to come on so quickly (he was fine early Sunday afternoon), and so we are meeting with a lot of different specialists - pulmonary, ENT, cardiology, etc. We know he is going to get a PICC line (which threads through an artery to his heart) and an NG (feeding) tube.

Congestive heart failure for a baby is not irreversible like it is for an adult, so there is still a chance we can come through this without any permanent impairments. Last night was troubling until around midnight, but they seem to have stabilized him since then. He is back to having irregular O2 levels even while on oxygen, which puts us right back to where we were the day he was born. He actually has more wires and IVs than he did the first time he came through - the picture is below. Still the situation is steadily improving from last night - they just took him to 2 liters of O2 from 7 liters last night.

We don't know a lot about the future yet, except that we'll be in the hospital for awhile. They are going to do more tests and are trying some medication on him that will help his heart pump better. The doctors are being typically obtuse about what our milestones are, but I suspect they're watching to see if he can take his medications orally/nasally rather than intravenously, and to see if they can get him back off of oxygen. At some point, if they can't send him home they'll have to do the surgery, but I don't know how much time they're willing to take before they call the shot.
JLL

Saturday, August 1, 2009

Gabe makes funny faces





Gabe makes the funniest expressions. He has a very pouty bottom lip and a very playful smile. He is impatient when we are warming his bottle at night. Occupational Therapy said his suck is really good. Lactation pretty much gave me permission to stop trying to nurse because it just isn't happening. I am continuing to pump about 5-6 times a day. We are going for a speech eval this week so they can do a swallow study to see if Gabe has reflux (I really think he does). He doesn't throw up alot, but he seems uncomfortable after feeds and has lots of congestion still which makes me wonder if he is getting clogged from the refulx. We also meet with the Cardiology dietitian for another weight check this week.