Sorry I haven't updated in a few days, but it's always tough to get used to a new routine. We got home Friday afternoon......finally. We have a bunch of new medications, for many different times of the day. We are also adjusting to giving Eliah his clotting factor in the mornings, five days a week. And we are still trying to figure out how we will take Eliah's blood pressure at home. The cheap monitors don't work on him, and the professional models are $3700 and hard to find. So, we are just going by how he looks to determine his blood pressure.
He gave me a good scare yesterday. I put him down in the crib to attend to Natalie, and he just laid there and stared. He would not look at me, or toys, or respond to sound. Then, after a couple of minutes, he just threw up, straight up in the air. So I picked him up and held him over my shoulder. He still just stared and was breathing very slowly. I kept trying to take his blood pressure to make sure it wasn't too low, but it wouldn't take on that cheap machine. By the time Kelley got home from Home Depot, Eliah was just falling asleep, and Kelley was able to get a blood pressure after many tries (it was a low/normal rate). Eliah then slept for 3 hours and woke up perfectly normal. What the heck? Eliah also passed what looked like a couple Kidney stones yesterday, so we put them in zip-locks and Kelley is running them by the dr. this morning.
We have also been adjusting to our new baby formula. We thought our hypo-allergenic formula was expensive. It was costing us $28 every 4 days. Now, they have switched us to Neocate, a super-duper hypo formula. It costs $40 every 3 days. Hopefully, insurance will cover it.
On top of all that, Kelley was able to get some good progress done on the kitchen renovation. He and his dad got a lot of the cabinets installed. We were a little behind schedule because of our hospital stay, but life continues on.
Thank you to everyone who thought about us during this rough time. Although it doesn't seem like it, Eliah is making good strides to catch up. Saturday was the first day that Eliah was able to prop himself in a sitting position, and stay there unassisted for more than a minute. Up until then, he was never able to bear any weight on his arms. Slow and steady wins the race. We are proud of our little tortoise.
Lots of love to all,
Ann, Kelley, Natalie & Eliah
Monday, April 7, 2008
Thursday, April 3, 2008
Eliah update Thursday
We are out of ICU and into a regular room as of yesterday afternoon. We believe that Eliah's blood pressure is mostly manageable now. He is not refusing as much food, but he is still in pain about 20 minutes after he eats. The nurses were shocked yesterday when he was having stomach pain yesterday. They were almost in tears and could not believe that he was only prescribed Tylenol. They insisted that he get something stronger. Unfortunately, he cannot have motrin (it inhibits platelet function), so our other options are Morphine or Benedryl just to knock him out. We tried Morphine, and just like Eliah, he had a different response to the medication. Most children fall asleep as the Morphine is going in the IV, not Eliah. He was wired for the next two hours, and his blood pressure went up during that time. So, no more Morphine. I didn't want to try Benedryl again based on the first time he took it (turned beet red and temp went up to 100) Luckily, we didn't need anything else, and he slept through the night.
We are currently waiting for a GI doctor to come by today to run his string of tests, if any. We laugh that we have seen every specialist that the hospital has to offer, but in truth, we have. We were asked to go on camera with Eliah, which we did, to help make a commercial for the hospital, since we have utilized so many services and specialists. They said that we were a good representation. It should be airing on our local NBC station in the next couple months.
Eliah ran another fever of 103 again a couple nights ago, but it only happens for an hour, then he is right back to a normal temperature. They started him on antibiotics for his port just in case. The CT of his abdomen was perfect, and the Spinal went well with no complications. They wanted to give Eliah his clotting factor before the Spinal, so I suggested we check his factor levels in a vein while he was sedated but right before they put in new factor. Great idea, huh? Two nurses, an Intensivist Doctor, a $25,000 vein finder (I had to sell my soul to get it), and many sticks into Eliah, we were still unable to find and/or access a vein. So, no test. What is with this kid? Anyway, they took a ton of spinal fluid and Eliah woke up with a hell of a headache. He screamed for 40 minutes until he finally exhausted himself to sleep. They wouldn't give him anything more than tylenol, but when he fell asleep they offered Morphine. Sometimes I wonder about these people. They have these "trainee doctors" running the show during the day and really don't know how to make decisions.
Eliah's Spinal fluid came back very clean. No sign of congenital infections, only 1 white blood cell, low lactate and pyruvate levels which mean it is unlikely that he has a mitochondrial disorder. It will take a couple weeks to get word back from France on one of the samples, but preliminary results show no cells relating to Aicardi Guitterez Syndrome (which is what the Neurologist was speculating at one time). So we are kind of back to square one. Everyone keeps telling us that Eliah's Hemophilia is not typical and that there is something else going on. Our Hematologist called down to Emory (instead of Duke), because they have a Hematologist that also specializes in metabolic disorders. So we may head down there in the next week. Duke is great, but they don't have the specific combination of specialist that we think Eliah might need.
On another note we are now on the "it" list over here in the regular Children's Hospital, thanks to Kelley. He and the nurses had a "run in" over his cot and among many other things. It ended up with the Head Nurse, a social worker and the Fire Marshall in the room. But in the end, we have been getting everything we want, and some dirty looks from nurses to boot. We are now known as the trouble makers.
Anyway, thank you so much for all that have come to visit us and thought about us. We are very thankful to have such good family and friends. And a special thanks to Kelley's parents for taking such good care of Natalie!
Ann
We are currently waiting for a GI doctor to come by today to run his string of tests, if any. We laugh that we have seen every specialist that the hospital has to offer, but in truth, we have. We were asked to go on camera with Eliah, which we did, to help make a commercial for the hospital, since we have utilized so many services and specialists. They said that we were a good representation. It should be airing on our local NBC station in the next couple months.
Eliah ran another fever of 103 again a couple nights ago, but it only happens for an hour, then he is right back to a normal temperature. They started him on antibiotics for his port just in case. The CT of his abdomen was perfect, and the Spinal went well with no complications. They wanted to give Eliah his clotting factor before the Spinal, so I suggested we check his factor levels in a vein while he was sedated but right before they put in new factor. Great idea, huh? Two nurses, an Intensivist Doctor, a $25,000 vein finder (I had to sell my soul to get it), and many sticks into Eliah, we were still unable to find and/or access a vein. So, no test. What is with this kid? Anyway, they took a ton of spinal fluid and Eliah woke up with a hell of a headache. He screamed for 40 minutes until he finally exhausted himself to sleep. They wouldn't give him anything more than tylenol, but when he fell asleep they offered Morphine. Sometimes I wonder about these people. They have these "trainee doctors" running the show during the day and really don't know how to make decisions.
Eliah's Spinal fluid came back very clean. No sign of congenital infections, only 1 white blood cell, low lactate and pyruvate levels which mean it is unlikely that he has a mitochondrial disorder. It will take a couple weeks to get word back from France on one of the samples, but preliminary results show no cells relating to Aicardi Guitterez Syndrome (which is what the Neurologist was speculating at one time). So we are kind of back to square one. Everyone keeps telling us that Eliah's Hemophilia is not typical and that there is something else going on. Our Hematologist called down to Emory (instead of Duke), because they have a Hematologist that also specializes in metabolic disorders. So we may head down there in the next week. Duke is great, but they don't have the specific combination of specialist that we think Eliah might need.
On another note we are now on the "it" list over here in the regular Children's Hospital, thanks to Kelley. He and the nurses had a "run in" over his cot and among many other things. It ended up with the Head Nurse, a social worker and the Fire Marshall in the room. But in the end, we have been getting everything we want, and some dirty looks from nurses to boot. We are now known as the trouble makers.
Anyway, thank you so much for all that have come to visit us and thought about us. We are very thankful to have such good family and friends. And a special thanks to Kelley's parents for taking such good care of Natalie!
Ann
Tuesday, April 1, 2008
Small update
On a pleasant note, we had a number of wonderful friends and family visit today, and we are so grateful for seeing happy faces. The pictures include a friend who came up to visit from Columbia today bearing gifts. One gift was the blanket that Eliah is under (like a fort). He was mesmerized by the glowing elephants.
Subscribe to:
Posts (Atom)
