Tuesday, January 20, 2009

Jax update

Jax has done okay since his grey episode on Friday. I took him in yesterday and I think it was decided that he aspirated. We just restarted bolus feeds a week ago so she thinks we started to fast. So we are back to continuous and we will increase slowly. He is still very whiny with this tooth that just won't poke through, needless to say we have used lots of tylenol.
His pulmonologist also wants him on c-pap at night. But a new law this year prohibits it in kids under 60 lbs. Because the FDA never approved it for toddlers and babies. So we will be turning his O's up to 1 liter at night, hoping the extra pressure will help, it already has, he has been sleeping all night. Yeah. She also wants us back at the ENT to see if there is anything they can do about his narrow bridge. His tonsils are small, but he needs his adnoids out and see if there is a way they can open up his airway from his nose. As you probably know downs kids have very flat bridges.

When I called my homecare company to bring me an extra tank, because I will go through it a lot faster, they said I have to get a concentrator. I don't want a concentrator. They brought it out last night. I hate it already, I will be fighting today to bring my M tanks back. That thing is so noisy. I can't hear if Jax wakes up, and I can barely hear his monitor. And that thing vibrates the entire house. So this noisy monster is going back today, even if I have to raise a little h#ll.

An update for everyone that has blankies coming. We've got all the material, and there being made right now. I've already had to get helpers, I'm so excited this is taking off already. Hugs from us


Junior said...

Glad Jaxson is doing okay.
Oh, I hate the concentrator. In summer I can't use it because it heats our house up so much. We have to have it in a separate room, and just run a long tube, because of the noise(not to mention it will make your electric bill awful).
Junior was on cpap before he weighed 60 lbs, but he was 8 years old so maybe that is the difference.

Melissa said...

Ugh, that would drive me up the wall not to be able to hear him at night with that noisy thing! I feel so bad for you...Hope you get what you want soon;)
I'm so glad that Jax is doing well...praying that he get's even better soon!!

The VW's said...

Glad to hear that Jaxson is doing well, besides a painful tooth! I had never heard of a concentrator. Gavin was on oxygen for quite some time and they never told us we needed one. I hope you can get this figured out!

I hope that you don't mind, but I put your blog site on my list of families to visit and pray for. I'm so thankful to have found you and your precious son! It's sad that there are others suffering and going through similiar trials, but it is helpful to 'know' others who get what you are going through.

Tara Bennett said...

I hope the new feeding works wonders.

I hope the O2 at night helps.

Hooray for the blankies! You're amazing!

WheresMyAngels said...

Wow, I never heard that about cpap machines. I believe Mercede was under 60 when she got hers. Actually hers is a bi-pap (both girls have a bi-pap machine and my husband has the c-pap). Cheyenne has had to have surgery on the back of her tongue on the lingual tonsil to help with her sleep apnea, she also had tonsils and adnoids out when she was two. I know surgery for your son would be hard because of all the issues he has. Cheyenne still has severe apnea even after the two surgeries (Mercede has had a T % A also, but no surgery on the lingual tonsil, I had never even heard of the lingual tonsil til a few months before Cheyenne had surgery on hers)

I also wanted to let you know that it is more rare for a child to have the inherited form of a translocation. Translocation is found is approximately 3% to 4% of the DS population, only 1/4 of those are inherited, leaving 3/4 of individuals with translocations to have just happened and not be inherited. The only way you would know if it was inherited is to have both parents tested. A friend of mine is a carrier and only one of her four children has down syndrome. If a male parent is a carrier the risk of having a child with down syndrome is only 3%. So far I have only ran across two families that the father was a carrier. What is really weird is that I have ran across more families that have more than one biological child with down syndrome that aren't carriers. In fact I know two families that have three bio children with down syndrome and none of them have the translocation form of down syndrome. Genetics is fun. lol I do not know if either of my parents is a carrier, I do know that my only sibling is not one as she was tested. So it may be something that occured just in me which would be called a de nova translocation.

I don't know if you ever use Dr Leshin's site but it is wonderful for information. Here is a link to information I just commented on about translocation (down the page)

I hope they can help you out with the oxygen, that would be upsetting not be able to hear him. I think I'm going to have to ask for O2 for Mercede as she refuses to use her bi-pap machine and I can tell her apnea is getting worse. They wanted to trach Cheyenne but I have refused until I see it becomes a nessary thing. I do know it has affected her mentally, but right now her heart and blood pressure are fine so I am weighing the benefits against the risk.

Oh if you didn't know what a bi-pap was compared to a cpap (you may know, but I sure didn't, lol). I copied this for you.

"CPAP, continuous positive airway pressure, delivers a single continuous level of pressure. CPAP is usually effective in treating obstructive sleep apnea. BiPAP delivers a higher pressure while breathing in, and a lower pressure while breathing out. BiPAP can be used to treat obstructive sleep apnea and is sometimes effective in treating central sleep apnea. I t can also be used to assist ventilation in various pulmonary and neurological disorders."

I HATE the bi-pap! But we haven't had oxygen in our home since 1993. Can't say I miss those big tanks either.

Hope you made it thru this novel.lol We will add your son to our prayer list at church.

WheresMyAngels said...

You know Babies with Down syndrome was how I found out my daughter had down syndrome. My doctor had never heard of translocation 21 but told me she would be like a child with down syndrome so 18 years ago, I bought that book and that is how I found out she did have it.

Not sure if times have changed but insurance refused to cover our genetic appointment and our test to see if we were carriers (they said they would of paid for it if I was pregnant at the time). We had Aysha tested at birth. I told the doctor to test her to make sure she didn't have down syndrome, knowing that way, she would get a free test to see if she was a carrier ;) and she was. I would love to know if one of my parents is a carrier but don't have that extra money to spend on it, plus if one of them was, they would feel guilty, which they shouldn't feel.