Wednesday, August 26, 2009

We are supposed to start school on Mon., but Olivia is quite sick right now and most likely has pneumonia. She gets it every time she gets a cold. I'll probably take her in tomorrow if she doesn't miraculously recover overnight. Victoria is coughing but usually ends up with a sinus infection, not a respiratory one. I am doing my best to keep the girls upstairs and Tomas as far away as possible. Unfortunately, it is almost impossible to keep the germs away. Even just taking Olivia to the doctors means putting all three of them into the car next to each other. Plus by the time I know they're sick they've been all over him for days.

He had a dying spell this morning. I HATE that term and I HATE the episodes. He stops breathing because he is refluxing/choking. He goes all limp in my arms and I just have to wait and pray. It only lasted about 15 seconds but that is a VERY VERY long time when you are waiting for your child to breathe. Also, it is just not supposed to happen at all anymore since his second surgery. That means his nissen is not working 100% of the time, and probably means he's looking at a 3rd surgery on the sooner rather than later side.

He just saw his pulmonologist on Mon., and we got mixed news. He doesn't need a CPAP while he's sleeping, but does need to be on the oxygen for at least a year and I have to be good about traveling with it so he can have it for naps. The doctor also wants Tomas to get Synagis (RSV vaccine) throughout the winter, the whole family to get flu shots (we always do) and for Mike to get the H1N1 vaccine. I'd really like to see the H1N1 be out awhile before sending anyone in the family in to get it - just makes me nervous being rushed like that and so new.

We are all just bumming around today. The girls are in cartoon heaven upstairs (which looks like a mini tornado ripped through!). Tomas is using those ultra-flexible legs to kick everything in sight. He actually aims them just like his hands. It is pretty funny. He likes to aim for my esophogus when I'm leaning over him to suction him out. He'll actually re-attempt if he misses that "soft spot" on mommy's neck. Stinker.

Saturday, August 22, 2009

Look what I can do!

This is such a big accomplishment for him. First, that he is even able to tolerate being on his belly and second, that he can hold his head up that high. Of course, Olivia and Victoria are his biggest cheerleaders.
We went to a playgroup yesterday with local families who have a baby/child with Down Syndrome. There were four other families and one who couldn't make it. All the Down's kids were boys! They ranged from 15 months to 4 years. It should be a great group for Tomas as he gets older. As it was he stayed awake the entire time just watching all the activity. The other nice thing about it is two of the families have older girls around the ages of my girls. I am very happy that they get the chance to have friends who TOTALLY understand what is is like to have siblings who need so much special care.
As usual having a mommy network is invaluable. None of the other kids had quite as many medical issues as Tomas (remember he's a 5%-er), but they did have a lot of the same stuff - just spread around between the kids. It was great to get to talk and hear their stories. I had read way back when this all started the 80% of Down's babies are born to moms in their 20's. It didn't quite make sense then as your risk goes up after 35, but yesterday it all became crystal clear. The moms were all young (except one other mom) and non of them knew pre-natally that they were carrying a Down's baby. It all snapped into place. Women over 35 get all the high risk ultrasounds and so usually know ahead of time. Younger moms don't. You can follow the rest of the thought process pretty easily as to why only 20% of Down's kids are born to women over 30. So sad.
Next week should be interesting. I take him to the pulminologist on Monday to get the results of the sleep study. Also, on Friday the nutritionist comes out to weigh Tomas against his baseline from two weeks ago. I'll let you all know what happens.

Tuesday, August 18, 2009

My irritation level is running high these days. I am finding just about every facet of Tomas' health care is bothering me.

His GI doctor is one of the best in Dallas but hasn't reached out for other opinions to find out what is causing the swelling around the g-button. Tomas is still retching when the swelling goes down and would throw up if he could. As it is he just starts to suffocate from all the choking and retching and I have to empty his stomach so he can breath again. It is reminiscent of the time before his nissen surgery although with much less frequency. The thought of switching doctors and moving records and especially re-testing Tomas is what is making me wait through one more round of appointments before I do anything. Irritated.

His sleep study was done on the 12th but I don't have the results yet. The PEDIATRIC sleep institute didn't have infant cannulas They only had pediatric sizes. Could they not see they had an infant scheduled? I mean really what would it cost to buy a box of infant cannulas and leave them in the closet for when you need them, and why bill yourselves as able to serve infants? Even worse,I'm afraid it will need to be repeated because he hardly slept at all (his stomach was bothering him)and did not fall into a deep sleep until around 3:30 in the morning. I'm not sure the doctors got enough information. Irritated.

Tomas' oncology checkup was last week. His hemoglobin levels have dropped but are still in normal range so he just needs a follow up in a month. However, he as some white spots that are popping up on his body. I showed them to the doctor (not his regular doc - she was stuck at hosp.) and she said they were nothing to worry about. When I got home I read his checkout summary and the visit was coded as "Low Grade Myelodisplastic lesions". What? Irritated.
His pulmonary issues are the same. I do not hear any improvement with his breathing. Most likely it is because I can not manage to fit in 4 breathing treatment a day. Sometimes I get 2, sometimes I get 3, but rarely 4. I just run out of time. I am trying to improve my schedule and make it a priority, but between physical exercises 3 times a day, oral exercises 3 times a day, suctioning at least once a day, breathing treatments, chest patting, oxygen set up when he naps, making sure the feed bag doesn't run dry and all the tubing stays in place, medication, and regular household stuff, something always gets forgotten. Irritated (at myself).

Now, since this is the crankiest post I've ever written I would not want you all to think I am sitting on my front porch surreptitiously shooting bb's at all the skinny joggers going by or anything else like it. I am grateful to God for every moment of every day, thankful for the good ones and offering up the bad ones. He has graced me with the gifts of calm, peace, and hope. They have never left me, not even when all the darkness the world can conjure up tries to suck me dry. He is always there, if not immediately present in my mind, then quietly calling me to walk away from the troubles of the day and find rest in Him. I know I am blessed, and I know I am unworthy. Therein lies the paradox of humanity. C.S. Lewis calls it the "unbearable compliment".

God bless you all,