Tuesday, July 8, 2008
clinic update
Just thought we would give you a quick update on Jakers clinic day today... it ended up being much longer than usual, due to the fact that he had to get a blood transfusion and have a few more tests run. He was up eight times last night to go to the bathroom. Twice he did not make it there on time. His poor little body is shriveling away and they are starting to get worried about how much weight he has lost. On the day that he was diagnosed, he weighed 45 pounds, today he was down to 36.3 pounds. Almost a 20% drop in two months. If he cannot get some weight back on and start feeling better by next Tuesday, they are talking about putting in a feeding tube. His counts also came back very low, thus the transfusion, which will hopefully give him a little bit more energy to start eating and feeling better. Even though it was a long and exhausting day, this little guy continues to amaze us with his strength and bravery... two PEG shots, his port accessed AND a transfusion all in one day... we got no more than a few well deserved outbursts from him. He did not move an inch for the shots which is leaps and bounds from where we began, he even interacted with the nurses and the doctors for once, playing with toys and puzzles and books. It has and will be a long and difficult road, but there are small steps that we have taken in the right direction-- it always could be so much worse. Such brave kids! If only we as adults could do half as well...
Subscribe to:
Post Comments (Atom)
13 comments:
His poor little body. Hope the blood transfusion gets him the energy he needs.
Heidi, I think about you guys everyday. Please know that you continue to be in our prayers.
Mindy
That breaks my heart to see him like that, and so skinny. I am so glad that his clinic day was easier for you. You are in our prayers daily.
I'm glad that he is such a little trooper. All of the little sunbeams remember him when they say the prayer every week, it is so sweet.
He is so skinny, but still so cute!!
You always seem to compliment Jake and the trooper he is, but I hope you realize how amazing you are. I know that I would not be able to handle what you are going through with such calmness and stregnth. The small 'venting' sessions we have are well deserved, & you don't vent enough. Thanks for your wonderful example of what a mother should be! You are a trooper too!
I love you guys.
My little boy had a blood transfusion as well, for a different cause, but it was life threatening. It makes me thankful for it when I hear about it.
Best wishes always.
Poor little guy. I am praying that he gets some strength back. I am glad he had a good time with his Dad and you were able to hang out with the other boys.
Heidi, I agree with previous posts. You are amazing and so strong. Breaks my heart as well to see the toll this all has taken on Jake's body but what a fighter he continues to be. Jake is a "regular" in our daily prayers. We love you guys!
What!?! You started comment verification as well. What is Double D going to say about that?
Thanks for the update, it is helpful to see how things are going. I know you said today Heidi, when talking to you that Jake's treatments, meds, lab draws, etc. are just a part your life now, but know that we see the strength your whole family has dealing with this battle. It is an every day thing for you guys and you are so strong in the way you deal with it. Thanks for your shining example of courage, patience, love and faith. Sorry about the deleted comment, I had some serious editing that I missed before (it is late).
Heidi, I'm so sorry that Jake is still having weight issues. I remember just a month ago thinking Livi would blow away in a steady wind. (she had gone from 35 to 27lbs.) But ironically so, since her bout in PICU she is up in her weight. Tuesday at her appt. we had much to celebrate as her weight is back up to 33lbs. She is on TPN which is almost a complete caloric replacement for really sick kids and easily put in through their port. Perhaps you should talk to your doctors there about getting Jake on that. Livi is on it for 14 hours through the night and doing very well with it.
Good Luck!
Post a Comment