Friday, October 30, 2009

Oximeter story: Part 2

Ok,  the driver came this morning. It was a different driver than yesterday but one who had been out here many times and is very aware of Tomas' life. He looked at his finger and said, "It's not going to work." They sent a new unit but with another fingertip sensor. This one is softer and would make a great teathing toy I'm sure, but still too huge. He said that was all they had and the office had called the doctor and she said we just needed to find a way. I am doubtful of that because his doctor is an amazing woman, but that is another story. Anyway, I go and get my medical tape, which is the duct tape of this house and can perform mini miracles on it's own. I do my best taping job and it lasts on his finger about 2 seconds. It is just too big. His finger isn't even long enough to hit the sensor tip.

As the driver was getting ready to pack up everything and go I notice the input jack on the sensor is the same as his oximeter now. I just unplugged his toe sensor from his current unit and plug it into the recordable unit. It works!!! Hooray, moms rock, yadda, yadda. Diver leaves, about an hour later the batteries in the unit die. No charging plug. Luckily I had AAs so I just reloaded, but I am seriously considering putting the dead batteries back in it before they come for the unit on Mon.

It also only flashes an alarm, no sound. So I am sitting cribside for his naps, and not sure how to work tonight. Maybe get another sensor and wrap his other foot and plug that into the old dinosaur unit.

Thursday, October 29, 2009

So, if I hadn't had a really great day with the girls I would be so ticked right now. Tomas' pulmonoligist order a 24 hr recordable pulse ox LAST THURSDAY to try and figure out what's causing his really deep desats. I called on his home health company Tuesday asking where it was, they said it would come on Wed. I told them that I had to leave the house at 2 that day and wouldn't be back until after 6. I get a cell phone call at 5:30 with the delivery guy outside my door. I told him I wasn't going to be there for another hour. They have to deliver it today instead. Ok, fine. The poor driver shows up and asks where the person is that it is for.  I say it's for the baby. He says - It's never going to fit. They sent a fingertip oximeter!!!! For a nine month old!To keep on for 24 hours! So now they are going to deliver the correct one tomorrow. Arrgh. The whole thing is we are trying to get this all done before the surgery next week. I don't know what is wrong with him, but his breathing is SLIGHTLY more labored than normal and he will only stay awake for 1-2 hours at a time. If it keeps up I'll have to take him in, but he acts completely normal (playful and happy) when he is awake, so I hate to have him poked and proded for nothing. Decisions, decisions...

Tuesday, October 27, 2009

2/3 of my heart giggling away in my bedroom, the other 1/3 was in the bathtub. Baby giggles have got to be the BEST sound known to humankind.

Monday, October 26, 2009

Tomas does have to have the surgery for his hernia. The doctor said it is not reducing (pushing back in), and that it is an acute issue but not an emergency. He wanted to do it this week, but I asked if he thought it could wait until next since Mike is out of town until Friday. And Halloween is on Sat. and I would be so sad if we couldn't do anything with the girls. He said it could, as long as it doesn't show any danger signs. I am well aware of what those are since he's had the hernia for so long. If anything should come up Mike will, of course, fly home. But since he's already planned it he may as well finish up this week and then be able to take a few days off next week.

After talking with the surgeon he suggested splitting up the repairs that need to be done. The others will be fixed later. Originally, we were going to repair everything (morgagni, hiatal, umbilical, any adhesions from previous surgeries, nissen re-do) all at the same time. But with the new finding from the ENT (reflux still going on) it is pointless to fix anything in his stomach because it could open up again if he starts retching.

If we want to try feeding him through his gastric port than we need to do it before the big surgery so if he does stomach crunch it won't tear anything open. Then, either it will work and he can tolerate gastric feeds and his stomach doesn't contract and the surgery will have a greater chance of sticking, or the feeds don't work and we go back to j-tube feeds and the surgery will still have a better chance of sticking because we aren't putting anything in his stomach. The key being we need to try before the surgery.

As for the upcoming surgery, I don't have a date yet, just next week. The Dr.'s office will call later with the date. It is supposed to be an outpatient surgery. They'll be keeping him for a 23 hour obs. and if all goes well he can go home. It will be at Medical City. The Dr. said the only unknown is how well he'll be able to get the bowel back in due to the previous surgeries.

I am praying like crazy for the courage to move forward. The last surgery was so traumatic. For those of you new to the blog, Tomas bled out and nearly died twice. The surgical team didn't want to go back in to fix him because it was too risky to lose that much more blood. So instead they kept repacking him all night long and eventually he did stop bleeding. Then he just laid there completely still for several hours until he finally gave out and began dropping his sats. His heart rate took a nosedive. Thank God the respiratory therapist was in the room at the time. She pulled the CODE cord and everyone came running. He was bagged and pulled through, only to have the same thing happen again about 1 hour later. He needed a blood transfusion by then. He was 6 weeks old.

I know with my mind that he is a much healthier baby than he was 7 months ago. My heart still aches and my body still trembles when I relive it though. He did have ear tubes placed in July, but they didn't have to cut into him to do that and I was only stressed because of the anesthesia issue. I need to let the past go and focus on this time. Easier said than done, but I have great friends, an amazing family, and an awesome God to help me.

Friday, October 23, 2009

Quick update:
I just saw his pulmonologist this morning. She is going to order a recordable pulse-ox to monitor and track his desats. She mentioned seizures as a possible explanation. Really at this point it is a very large unknown because his lungs sound so good. It could be his airway shutting for protection from the reflux. One encouraging thing she mentioned was that if it was from the reflux she would recommend surgery to fix the hernia's before putting in a trach. I guess that is better but either way for the reflux he's looking at another surgery. Just the thought makes my stomach hurt. I was really hoping to have some more time (and healing) from the last surgery (for me mind you!).

She is also going to conference with the ENT and GI to see how everyone wants to proceed. I guess right now everything will depend on what the pulse-ox records.

Tomas sees the new surgeon on Mon. morning to evaluate that stinking umbilical hernia. Darn thing has already been fixed once, opened back up, and is now trying to close and trap his bowel with it. If he recommends surgery then we will definitely look long and hard at what else can be done while he's under to make the most of it, since, as the doctor reminded me this morning, he is a high risk anesthesia patient. No kidding!

I have to take him for his flu booster this afternoon and I'll have the pediatrician take a look at the hernia just to make sure it can go through the weekend without trouble.

Mike is taking Olivia to a ghost walk in the historic downtown tomorrow night. Have fun! I hate being scared. He's been trying to get me to one of those things forever. So glad to pass that torch on to her. It can be their special thing. Yuck.

Wednesday, October 21, 2009

I really need to get a new lullaby CD for Tomas. I play it on repeat while he is napping and until the rest of the house is asleep at night so he can have some "white noise". It is not that it gets on my nerves or anything it is that the song "You are my Sunshine" is actually quite sad. Sometimes it can be very difficult to keep the fear of the future at bay and that song does definitely not help. Most times I don't even notice the scars, but there are times when I am playing with him and kissing his belly and the past just comes rushing in, and other times during the most ordinary tasks the word leukemia just explodes in my brain and it is all I can do to keep it together. He is desatting quite a bit when he is asleep and had two large desats while he was awake today so I'll see what pulmonology says tomorrow. Can you have apnea while you're awake?

I saw his new ENT today and got mixed news. His laryngomalacia is resolving and only considered mild, but during the scope the Dr. found significant swelling of the larynx, indicative of severe reflux. As you all well know Tomas is not supposed to be refluxing anymore. First, because of the nissen and second, when the nissen didn't hold we switched to the g-j. So, it looks like he may be refluxing his secretions. If this turns out to be the case and is severe enough it could mean a trach.

I am also closely monitoring his umbilical hernia because it looks like it is closing. That is great as long as it closes with all of his bowel on the inside of the abdominal wall. There is a small part that I can't push back in so I'll call the surgeon in the morning to see what he thinks.

He had his 9 month check up last week and the Dr. stressed me out by asking if he could pull up to a standing position yet. Umm, no. Then he asked if he was standing at all. Umm, nooo. Well how about sitting up? Ummm, nooo - 2 major surgeries, 1 minor, 3 procedures requiring general anesthesia, 2 intubations, 2 near coding bagging episodes. No he can't sit up yet. But Tomas' PT put me back at ease on Tues. and said he is making great progress (which I had also thought and was quite happy with until the Dr. visit!!!). Talk about a disconnect between patient and doctor.

Despite all the unresolved issues he really does look great these days. He finally got some teeth! the first one came on the 16th and the second 4 days later. That means my fingers take a beating during his oral exercises. They are so sharp when they first come in! I took the kids to a pumpkin patch the other day and he loved it. They all had a great time and he really enjoyed being outside. I'll ease up a little when he gets his RSV shot and try not to worry about germs so much.
It is funny how I notice so much more with him than I did with the girls. Do any of you remember when your baby was first able to reach up and pull a hat of of his head? I was actually cheering him on yesterday. I will regret that now that winter is coming, but it was so cool to watch him connect the thought process with his muscle control. It is the moments like that that make everything else ok. God is so good beyond anything I can comprehend. Really, think about it, that small tiny moments of pure joy in the middle of folding socks (no laundry fairy as of yet!)can erase so much pain. Not only that, but you go back for more, and are willing to take the bad to get to the good. Simply amazing. Simply God.

Monday, October 12, 2009

Mike and I got some wonderful news the other day. All of Tomas' holes in his heart have closed. He is not even considered a cardiac patient anymore and only has to go back in 1 year for a follow up. I am so happy I can't describe it. His cardiac issues were never his biggest problem but they always exacerbated the other ones because many doctors were afraid to use certain drugs, or classified him as high risk . Now he can be considered normal for treatments. Plus that is 1 doctor off the list of the ones he was seeing regularly.
He has had some great social growth in the last few weeks and has now figured out that if someone else is holding him and he can see me than surely I can't be the one holding him, and he cries. I like to call it the "not the momma" syndrome. The big deal about that is it is average for his age - meaning he is on target for at least one of his mental milestones. He has also figured out that if he can't see you, you are still there. He lifts his head out of his car seat to look over at Victoria, puts his head back and waits a few seconds, and then does it all again. Very cute. He has started vocalizing a lot more and now will call out for attention, especially if the girls are nearby. I can't imagine why, but he seems to love the chaos they bring with them.
I also followed up with the new GI doctor and we went over the plan again to get Tomas on oral feeds. First step was to reduce his calorie intake back to the normal concentration on his formula. I did that last month, and his weight remained the same for that month (no surprise). He is 9 months old and weighs 15lbs. Next up is to retry him on regular infant formula (milk protein based) instead of the Nutramegin. I'll be trying that next week to see if he can process the proteins without fussiness. All the while his calorie intake should be small enough to make him burn through a lot of his body fat so he can get hungry. When he is ready I'll take him off his continuous feed for several hours, allowing him to get really hungry, then give him a small amount of formula by tube into his stomach. The idea is that he should be so hungry his stomach will process the food quickly and not try to retch or gag or reflux it up.
If we can retrain his stomach then the battle is won. It then becomes a matter of teaching him how to eat. He is very interested in food but does not know how to move it through his mouth properly. It is just like when you first spoon feed a younger baby. It will take patience for sure. Also, if his stomach stops trying to send stuff back up and allows food to move through without the retching his future surgery should go much better.
Speaking of the surgery, Mike and I found out Tomas has another hernia, this one in his intestinal tract below his left lung. That makes 4 hernias for my little guy. It can be repaired with the others, but that surgery is turning out to be huge and I am placing bets now that the docs will tell me they aren't going to be able to do it all at once. I meet with the new surgeon (insurance issue) next month.

When I had him at his new Endocrinologist last week, the doctor said something that really got me thinking. He said the ironic thing about these kids is they typically have major heart issues but are also the kids with the biggest hearts, and that they are sent here for us. I think that is a lot of pressure for one little guy. If he should grow up to be moody and tempermental like the rest of us he is somehow not fulfilling his purpose?