Aug 31, 2010
Thankfully he sleeps in a crib that is right next to mine so I can do this without leaving my bed. (Good planning on my part.)
Well after several days/weeks of this ... the sleep depravation adds up.
Why a sleep study? Back in May with his diagnosis, a sleep study was ordered to determine if he was trading oxygen for carbon dioxide ... basically shows how effective his lungs are. During that hospital stay it was determined he would need to go home on oxygen due to desaturation. Somehow the sleep study never was brought up again and I thought it was due to him going home on O2.
The other day his pulse dropped so low for so long and we told the pulmonologist about it and he ordered it done. So we went last night.
Wires. Everywhere. Tubes. Everywhere. Baby. Not thrilled.
He was asleep by about 10 pm and by 5am they woke him up and we were gone. She came in several times during the night.
Everything was fine with the whole evening except this one thing ... she said she was not allowed to give him oxygen unless he desaturated a certain amount for a duration of time. (Any of this sounding familiar to anyone?) I kept having flashbacks of the hospital when the nurses and I (in my sleepy state) would be arguing about how his doctors ordered oxygen for him.
But my hopes were dashed and my anger grew as she told me this morning that he did indeed dip several times but that SHE made the judgment call not to give it to him. aaaaaaauuuuggh!!!
So ... I have decided what to do about it. (After calming down.) I will call the Pulmonologist (who ordered the sleep study AND the oxygen) on Thursday and ask for the test results. I will then also ask for clarification of when he needs and doesn't need oxygen. I need clear guidelines. I will then ask them to give it to me in writing. With their signature and their phone number on it. I never want to find myself again arguing for oxygen for the baby!! I've done it too many times already.
In other news: Last night was his last dose of his 2 oral antibiotics. And around noon today I noticed he has a new spot on him (the ones they diagnosed as MRSA). By 2pm he had a 102.8 fever. By 5pm I noticed a second spot on him but fever is down to 101.4 and he is a grump. There is a rash starting on his face too. (sigh)
But ... tomorrow I will be seeing his pediatrician at 9am and she is going to help me sort this all out. AND we are going to discuss the possibility of him being transfered from palliative to therapeutic care. (More discussions about that on the blog to come.) But basically we don't want him to be denied services due to his prognosis.
Finally, I called the Neurologist office today to see if I could get some answers from them on this subject. And quite honestly, the nurse combed through his file and the ONLY diagnoses she could find were "hypotonia" and "possible seizures". NOTHING, not ONE thing about a terminal diagnosis. So now I'm wondering who gave him that prognosis? I was told them. But they say no.
Aug 27, 2010
Kaley was the first of the kids that met Manny. She went with me to the hospital in Orlando to help pick him up. I wanted someone in the back seat with him to make sure he was doing well. From this first moment he saw her, he was entralled with her. (And she was likewise with him.) This is the moment they met. I still have that outfit Manny is wearing along with one of the blankets he is sitting on. This picture is from March 26 ... it was the day he was 9 months old.
They have this special bond.
Aug 25, 2010
Today was the kid's open house. Went great. It felt really nice to walk into the school knowing where to go, where everything was, how it worked. Everywhere we went there were kids, teachers and administrators who knew us. Felt great.
Jacob ... things haven't worked out to get him accommodations at the school yet so we didn't feel safe to leave him there yet. We were prepared to go and discuss it with them today but he woke up feeling flu-like. So we called him in sick. Gives us time to work out the plan for him.
Manny ... he has this horrible infection around his gtube site again! Started Friday. The topical antibiotic isn't helping enough. The site is bleeding, oozing pus, looks horribly painful. He also keeps getting these quarter to half-dollar sized red marks with a blister in the center. They're all over his body. Gets 1-3 every couple of days. Called the doc but she was out sick and sent us to the E.
|Love that fresh morning face!|
Aug 19, 2010
Remember how we used to be scared by his gagging/retching episodes? The doctors thought it was seizures but turns out it's related to his tummy not emptying as well as it should. We have that pretty much under control. I adjust the rate, the volume and it usually works. If not, I suck some of the stomach contents out and voila. Instant relief. (Which shows it's likely tied to his nissen fundoplication or to gasteoparesis.) So these episodes are few and far between, we know what it is and we know what to do.
So of course, he decided to start something new. Friday night he had a bit of congestion (pretty typical for him periodically). Just to be sure he was getting enough oxygen, I put his pulse ox on. It was fine but his heart rate was almost 200! He eventually went to sleep like normal and we left his pulse ox on. He was breathing "weird" (the technical word - LOL). Hard to describe, just not right. Normally, we wait about 10 minutes after he falls asleep to put his oxygen on ... but before we could do that, his pulse ox was alarming.
Instantly, we put the oxygen on ... and no effect. He was continuing to decline. It was hitting the low 70's by the time I asked for prayers on my Facebook status update.
We woke him up and it would quickly go to 99. (Proving the equipment was working correctly.)
By the end, he had hit 66. WITH oxygen on. And I was packing for the ER.
Then all of the sudden, it stopped. He went to 98 while asleep and stayed there the rest of the night.
Since then, we've had a probe on him 24/7. We noticed he dips when he falls asleep, when he wakes up and is fine the rest of the night.
Today I told the pulmonologist all about it and he instantly ordered a sleep study. Mostly he is interested in respiration (C02) levels he said. That's scheduled for August 30. (He wanted it sooner but the only available day was the first night of school for the kids and I didn't want to leave them.)
Another goofy thing that happened today was we have a script to get the baby a blood test for SMA (Spinal Muscular Atrophy). We had the baby fast and went in. Let's suffice to say ... I have a new story for my classes about poor customer service. I left LIVID with no test done. Follow up story to come I'm sure.
Always an adventure around here.
Aug 18, 2010
On my way over, I got a call from Sherrie. We've known each other for 11 years now. We met because we were both adopting transracially. But turns out our paths were quite entwined. For example, our daughter Kaley was born 11.11.99 and taken to St. Joe's Hospital in Tampa. On 11.18.99 Sherrie's son Jordan was born in that same hospital. Cool part is, Kaley was still there in the nursery at the time. So we know they were there at the same nursery at the same time.
So we spent the day wandering Downtown Disney. Hot but fun!
We drove home and the kids were chatting the whole way. Asking when we would see our new friends again. 11pm and they were tucked into bed.
I muse on the world I'm in ... where there are kids who are of all different races; kids have various special needs; kids come from all over the world; kids were wanted and chosen.
"Adopted" ... one of the BEST words in the world. And I am blessed to be a part of this glorious world.
Aug 16, 2010
They told me it would be in effect on that Monday so Monday through Thursday last week, I called every day and still no progress. He was "inactive". Then we started back at the beginning to see what went awry. They again traced it down and worked to get it done. They said that by today it would be all done.
So back to square 1. I called this guy named Daniel and he called the big, big boss and stayed on the line until they changed it. Then in the morning he will call to confirm it and call me either way. So it's a possibility that we'll have insurance by tomorrow.
The reason this is a problem? The baby is out of numerous medications. He is out of gtube supplies (and without a friend Angela W, we would be in HUGE trouble). Then starting today, specialists are refusing to see him. Tests are being delayed. And he is sick.
Meanwhile, Sam (who will be 9 in a few days) and Luke (7) both have intoeing and their ankles are "collapsing" inwards. Doc sent them to the Podiatrist who said they immediately needed orthotic inserts in their shoes and if that doesn't work, they'll need leg braces. So the last picture is of the boys getting their feet measured for their inserts. They feel this is SOOOO cool!!
The top picture is of Manny playing with PlayDoh ... he LOVES it!
Aug 6, 2010
About 5 minutes before 9am, Manny fell asleep. Then it was time for court. The attorney asked us a few basic questions about our names, address, how long we've been married, if we understand the legal implications of this and why we want to adopt Manny. (The Judge had a tear in her eye by the time we told our answer about why we wanted to adopt him.) The whole thing is about 5 minutes.
Quick trip down to get a copy of the judgment so we have legal proof he is our son. (His birth certificate will arrive in about 4-6 weeks.)
Today was a GREAT day! Not every day you get to add a new child into your home.
We are truly, truly blessed.
Aug 5, 2010
Then, we discovered there was a glitch in Manny's medical coverage. As of August 1, he has no health insurance (NOT a good thing for a medically complex baby who is currently symptomatic and on regular home visits, has durable medical equipment, etc.).
We found that the day we adopt him that a different type of medicaid kicks in. And they will make it retroactive to the first of that month. Sooo ... the attorney contacted the Judge and told her of the situation and they changed the adoption date to THIS Friday, August 6 at 9am. Meanwhile, there are still papers to be gathered and signed but everyone is working feverishly to get those done. But the adoption authorizes all those to get started.
Today ... we went to Chuck E Cheese. Manny usually just sits at the table with me as the kids scatter. But today, Kaley asked if she could take him on a ride. The pictures are from some of the rides he so thoroughly enjoyed today!