11.13.2009
We're Home!
M. got home a little after noon today. Everything went well. A nurse will visit us at our home on Monday to teach us how to give M. the drug on our own. Should be quite the adventure. We'll keep you posted.
Looking for the Bright Side
A few minutes in between iv drips...cord free! M gets a chance to sit at the desk and color.
Auntie Gigi....your blanket was so comforting!
Popsicles make EVERYONE smile!
11.12.2009
Shoot!
So I'm here (J) for less than 15 minutes when disaster strikes...M's walking and gets wound up in the iv line. As I try to rescue her, I somehow yank the iv line too hard and it pulls out!!!
YES. We had to do it ALL OVER AGAIN. It was traumatic all over again, although her panic only lasted a short while this time as they had a better vein to work with and the insertion was faster. The good news is that they were able to put it in her elbow socket so she can use both of her hands for today and tomorrow. What a blessing that she can color and feed herself!
I'll post a couple of cute pictures later. We're trying to make this "special" time here at the hospital. Not the easiest thing!
Right now she's watching a video for the first time during my "shift". Thanks for letting us borrow Dora, Kaleigh! Mia told ALL the nurses how special this is! :-)
YES. We had to do it ALL OVER AGAIN. It was traumatic all over again, although her panic only lasted a short while this time as they had a better vein to work with and the insertion was faster. The good news is that they were able to put it in her elbow socket so she can use both of her hands for today and tomorrow. What a blessing that she can color and feed herself!
I'll post a couple of cute pictures later. We're trying to make this "special" time here at the hospital. Not the easiest thing!
Right now she's watching a video for the first time during my "shift". Thanks for letting us borrow Dora, Kaleigh! Mia told ALL the nurses how special this is! :-)
A New Day
We had a decent night in the hospital last night.
Other than the random leg pain. :-)
About an hour before bed, M. flipped out and said her leg hurt. Nothing else. Just her leg. Totally random. It took about 15 minutes to get her calmed down. The nurses and a doc checked her out and saw nothing, felt nothing etc. She was just standing there when it started to hurt.
She woke up four times doing the same thing. Crying and writhing and clutching at her leg. At about 11pm, they put a heating pad on and gave her some Tylenol. She started up again at about 2am, but I climbed into bed with her and she calmed down and slept the rest of the way. She's fine this am.
I wondered a few things.
1) The boys had massive leg pain with the H1N1--was that this? But no fever or other symptoms....appears unlikely.
2) Were the post-sleep ones really pain, or fear? We've noticed she's always a little rough at sleep the night after her transfusion. We always wonder if she has fearful dreams from her infancy experiences in the hospitals.
3) Could it be the drug that she's here to get?
The paperwork they gave me said it can cause muscle cramps. There was no "bulge" like a true cramp, but......
The Nurse Practitioner this morning thinks that's what it was. We'll watch her and see. Again, she's fine this AM. Good breakfast, AM PBS shows. She's content and pain free.
Her mom will be coming shortly, and then I'm off to a shower and up to Church for some work.
Other than the random leg pain. :-)
About an hour before bed, M. flipped out and said her leg hurt. Nothing else. Just her leg. Totally random. It took about 15 minutes to get her calmed down. The nurses and a doc checked her out and saw nothing, felt nothing etc. She was just standing there when it started to hurt.
She woke up four times doing the same thing. Crying and writhing and clutching at her leg. At about 11pm, they put a heating pad on and gave her some Tylenol. She started up again at about 2am, but I climbed into bed with her and she calmed down and slept the rest of the way. She's fine this am.
I wondered a few things.
1) The boys had massive leg pain with the H1N1--was that this? But no fever or other symptoms....appears unlikely.
2) Were the post-sleep ones really pain, or fear? We've noticed she's always a little rough at sleep the night after her transfusion. We always wonder if she has fearful dreams from her infancy experiences in the hospitals.
3) Could it be the drug that she's here to get?
The paperwork they gave me said it can cause muscle cramps. There was no "bulge" like a true cramp, but......
The Nurse Practitioner this morning thinks that's what it was. We'll watch her and see. Again, she's fine this AM. Good breakfast, AM PBS shows. She's content and pain free.
Her mom will be coming shortly, and then I'm off to a shower and up to Church for some work.
11.11.2009
Peace
Well, I got here a little before 3PM.
M. got her med drip just before 5PM. (wow--long day waiting for that)
We had a pleasant time for the couple hours before bed---it was clear she missed her nap and was eager for bed when it came. I had brought her "gigi blanket" from home and she was thrilled. I got her in her jammies, laid her down under the blanket, prayed with her, turned out the lights and just like that she rolled over on her side and went right to sleep. wow.
So, I'm sitting here in the dark doing a little worship planning. I'll do a little email, Face-book, play a little chess and then I'll watch a movie or two I brought along. (I've got headphones). :-) An oddly peaceful evening--so far....after a crazy week or so.
I was just telling a friend (on FB) that the hospital doesn't really phase us now after our experiences in them earlier on in marriage/parenthood. Of course, we'd rather all be home, but it's not terrible. Nor scary. We pray the meds do their thing and M. will be fine.
M. got her med drip just before 5PM. (wow--long day waiting for that)
We had a pleasant time for the couple hours before bed---it was clear she missed her nap and was eager for bed when it came. I had brought her "gigi blanket" from home and she was thrilled. I got her in her jammies, laid her down under the blanket, prayed with her, turned out the lights and just like that she rolled over on her side and went right to sleep. wow.
So, I'm sitting here in the dark doing a little worship planning. I'll do a little email, Face-book, play a little chess and then I'll watch a movie or two I brought along. (I've got headphones). :-) An oddly peaceful evening--so far....after a crazy week or so.
I was just telling a friend (on FB) that the hospital doesn't really phase us now after our experiences in them earlier on in marriage/parenthood. Of course, we'd rather all be home, but it's not terrible. Nor scary. We pray the meds do their thing and M. will be fine.
Changing of the Guard
Today was hard. The hospital is packed with sick children and the clinic for hematology was slammed. We waited nearly two hours to get M's turn for her iv placement. Then, someone came in wearing a mask. (flu prevention) As soon as she held M's arm, M flipped out. We were in a different room with different people than we usually are. I also asked them to try a different spot for the iv so that she could have the use of both hands for the three days. No such luck. They tried, but the vein was too small so we had to use her hand, again. It took almost an hour and THREE nurses holding M down to get the iv placed in her left hand...yes, the hand she colors with, eats with, etc. It's going to be a long three days!
Poor little thing was just whimpering by the end and big tears were rolling down her cheeks.
Now she's tucked up in her little room on the hematology floor. There's a nice big window where we can see a combination of houses and city streets...and a very close Dunkin Donuts that this mother might just have to visit on her way in to shift change with her hubby tomorrow. There was no coffee on the breakfast menu. ;-)
Thank you all so much for praying!
Poor little thing was just whimpering by the end and big tears were rolling down her cheeks.
Now she's tucked up in her little room on the hematology floor. There's a nice big window where we can see a combination of houses and city streets...and a very close Dunkin Donuts that this mother might just have to visit on her way in to shift change with her hubby tomorrow. There was no coffee on the breakfast menu. ;-)
Thank you all so much for praying!
On Their Way
Mom and M. are on their way to the hospital. We're not sure how long this will take. Does two to three days mean she'll be home tomorrow? Friday? Saturday? We just don't know.
J. will be there until three this afternoon. I'll meet her there then and take over until tomorrow morning, so J. can be home when the boys get off the bus. (They went back to school today for the first time in a week and a half.) We imagine they'll be a little worn out when they get home.
Why are we doing it this way? Well, I'll probably do better over night in the hospital. I can sleep through more than J. can, basically. And if you've been there--you know that a hospital is no place to sleep. J. really needs sleep with her heart situation: she's always fatigued as it is.
Please pray for J. too--her head is REALLY hurting. (has been for almost a week.) Is it heart/med related? Her version (with no fever) of H1N1 that the boys were thought to have had? We don't know. But she's really hurting. She'll call me if she can't hack it at the hospital.
So. Here we are. We're not as overwhelmed as we felt yesterday and the night before. But it's still stressful. We're praying the boys readjust and catch up at school, (without getting sick again). Praying for M.--that she will not be harmed by the drug she's receiving today, or the excess iron in her system, nor by new germs she might be exposed to at that hospital (she's got a cough already). Obviously we continue to pray for J. and her whole crazy heart situation.
As for me (dad), I'm struggling, because I'm feeling that so many opportunities at church are slipping away from me. I am rightfully devoting much energy to the callings of "husband" and "dad," but it's still hard when the calling of "pastor" is not fully engaged.
J. will be there until three this afternoon. I'll meet her there then and take over until tomorrow morning, so J. can be home when the boys get off the bus. (They went back to school today for the first time in a week and a half.) We imagine they'll be a little worn out when they get home.
Why are we doing it this way? Well, I'll probably do better over night in the hospital. I can sleep through more than J. can, basically. And if you've been there--you know that a hospital is no place to sleep. J. really needs sleep with her heart situation: she's always fatigued as it is.
Please pray for J. too--her head is REALLY hurting. (has been for almost a week.) Is it heart/med related? Her version (with no fever) of H1N1 that the boys were thought to have had? We don't know. But she's really hurting. She'll call me if she can't hack it at the hospital.
So. Here we are. We're not as overwhelmed as we felt yesterday and the night before. But it's still stressful. We're praying the boys readjust and catch up at school, (without getting sick again). Praying for M.--that she will not be harmed by the drug she's receiving today, or the excess iron in her system, nor by new germs she might be exposed to at that hospital (she's got a cough already). Obviously we continue to pray for J. and her whole crazy heart situation.
As for me (dad), I'm struggling, because I'm feeling that so many opportunities at church are slipping away from me. I am rightfully devoting much energy to the callings of "husband" and "dad," but it's still hard when the calling of "pastor" is not fully engaged.
11.10.2009
Please Pray For M: Hospital Here We Come!
Please pray for M. As you know she has a genetic blood disorder (Beta Thalessemia) for which she needs regular (every 3-4 weeks or so) blood transfusions. Because of the frequent blood transfusions, she requires a daily "chelation drug" to leach the excess iron out of her body--or it will attack and kill her vital organs.
At her transfusion yesterday, the blood work came back with bad news. All her levels are out of whack--and the daily oral chelation drug is not working. The iron levels are dangerously high and she needs to go in for a slow drip of another chelation drug to thoroughly (we hope and pray) cleanse her system of the toxic levels. (hence the hospitalization) Afterwards--for the next six months, we'll have to switch from the oral chelation drug to one we'll (as in my wife and me) have to give my subcutaneous needle injection nightly.
Please pray for her.
At her transfusion yesterday, the blood work came back with bad news. All her levels are out of whack--and the daily oral chelation drug is not working. The iron levels are dangerously high and she needs to go in for a slow drip of another chelation drug to thoroughly (we hope and pray) cleanse her system of the toxic levels. (hence the hospitalization) Afterwards--for the next six months, we'll have to switch from the oral chelation drug to one we'll (as in my wife and me) have to give my subcutaneous needle injection nightly.
Please pray for her.
Subscribe to:
Posts (Atom)
