Baby Heath is home! I don't have any more details but wanted to share the good news!
Blessings, "Gran" Sarah
Saturday, January 17, 2009
Friday, January 16, 2009
VERY Brief Update
I received a text message from Carrie this evening that Heath will go home tomorrow. He is doing so much better. Carrie will give me more details later.
Blessings,
"Gran" Sarah
Blessings,
"Gran" Sarah
Thursday, January 15, 2009
Wednesday's News
Here is the latest from Chris...
"I spent the night with Heath last night and he slept quite well - for the second night in a row! Mommy did the two before that. The blood tests the last few days have given them more specific information about the nature of the infection, so that they can better target their antibiotics. They made some of those adjustments overnight. They changed the needle and dressing of the port, and the docs are leaning towards keeping it in - at least until they finish the run of Ganciclovir. Heath continues to be in great spirits - playing, dancing, charming everyone who walks in the room. All the therapists - PT, OT, speech, - have resumed their work from our previous hospitalization, so he is getting much closer to being back on track developmentally.
Our deep bench of family has been depleted a bit - with mimi at work, sick aunt sarah, uncle robert at a conference, uncle jamie in haiti, and oma (Carrie's mom ella) hosting pinkeye Ella Brooks for a few days, but papa has pinch-hit quite nicely for all of the above. What do people do without this kind of help? We have also had a couple of conversations recently with folks who have children here who live 3,4, even 6 hours away. How do they do it? We will be sure to use our dear family this weekend, when I have a session retreat Friday night and all day Saturday as well as the usual Sunday morning activities.
We continue to be grateful for the wonderful support we are recieving for all quarters, and look forward to a celebration for Heath's first Birthday on Sunday. His first month anniversary of transplant was yesterday. What a whole new world it is!"
Blessings,
"Gran" Sarah
"I spent the night with Heath last night and he slept quite well - for the second night in a row! Mommy did the two before that. The blood tests the last few days have given them more specific information about the nature of the infection, so that they can better target their antibiotics. They made some of those adjustments overnight. They changed the needle and dressing of the port, and the docs are leaning towards keeping it in - at least until they finish the run of Ganciclovir. Heath continues to be in great spirits - playing, dancing, charming everyone who walks in the room. All the therapists - PT, OT, speech, - have resumed their work from our previous hospitalization, so he is getting much closer to being back on track developmentally.
Our deep bench of family has been depleted a bit - with mimi at work, sick aunt sarah, uncle robert at a conference, uncle jamie in haiti, and oma (Carrie's mom ella) hosting pinkeye Ella Brooks for a few days, but papa has pinch-hit quite nicely for all of the above. What do people do without this kind of help? We have also had a couple of conversations recently with folks who have children here who live 3,4, even 6 hours away. How do they do it? We will be sure to use our dear family this weekend, when I have a session retreat Friday night and all day Saturday as well as the usual Sunday morning activities.
We continue to be grateful for the wonderful support we are recieving for all quarters, and look forward to a celebration for Heath's first Birthday on Sunday. His first month anniversary of transplant was yesterday. What a whole new world it is!"
Blessings,
"Gran" Sarah
Tuesday, January 13, 2009
Tuesday Night
I spoke with Chris and Carrie briefly and they shared that the doctors have not yet been able to determine the specific source of Heath's infection. So, over the next few days, he will have blood draws from the port and a non-port site to discern where the infection is coming from. Of course he is being treated with some strong antibiotics for the infection and Tylenol is making him more comfortable. The doctors suspect that he may have had the infection before he was released from the hospital and it took a couple of days before it started causing problems. The port needle and dressing have been changed. Once the source of the infection has been determined, a decision will be made regarding the port (keep, replace or switch to an IV). Heath still needs 2 1/2 weeks of the ganciclovir for the CMV infection in addition to antibiotics for this additional infection. So, it looks like Heath will remain in the hospital for a few days until the doctors are sure the infection is under control. The best news is that Heath's heart continues to be strong and the infection is NOT a result of rejection-GREAT news!
Papa, Mimi, Oma and Grandpa Strow are of course pitching in to help with the Heath, Ella Brooks, the house and whatever else needs to be done. Westminster Presbyterian Church is continuing to graciously provide the Tuttles with meals. The Tuttles appreciate so much the support of family, friends and church families. Please continue to pray for them as they see Heath through his current challenge.
Blessings,
"Gran" Sarah
Papa, Mimi, Oma and Grandpa Strow are of course pitching in to help with the Heath, Ella Brooks, the house and whatever else needs to be done. Westminster Presbyterian Church is continuing to graciously provide the Tuttles with meals. The Tuttles appreciate so much the support of family, friends and church families. Please continue to pray for them as they see Heath through his current challenge.
Blessings,
"Gran" Sarah
Tuesday's News- Infection in Port
Carrie sent me the following text a few moments ago:
"Infection in port. Will remove and they are trying to decide what to do with IV or another port. Probably IV. Will probably be in several days but at least we know what the trouble is and can be fixed. More details later."
Carrie was going home to get some rest, so I expect more of an update late this evening. Very early on the doctors all told Chris and Carrie that this process would be "two steps forward and one step back".
Here's to waiting in hope for the "two steps forward". My "head" knew there would be days like today but my "heart" just hasn't been told yet!
Blessings,
"Gran" Sarah
"Infection in port. Will remove and they are trying to decide what to do with IV or another port. Probably IV. Will probably be in several days but at least we know what the trouble is and can be fixed. More details later."
Carrie was going home to get some rest, so I expect more of an update late this evening. Very early on the doctors all told Chris and Carrie that this process would be "two steps forward and one step back".
Here's to waiting in hope for the "two steps forward". My "head" knew there would be days like today but my "heart" just hasn't been told yet!
Blessings,
"Gran" Sarah
Monday, January 12, 2009
Running a Temperature
Carrie called and she and Chris are with Heath in the Duke emergency room. Carrie had told me this afternoon that Heath was very fussy and her "mommy radar" was up. This evening she took his temperature and it was 101 F. When the arrived at Duke, they took Heath right back because he is of course immuno-suppressed. The doctor discovered a temp. of 102 F so they are probably going to admit him to the hospital for what the doctors say a "two-day" rule out. If blood cultures don't grow any "bugs" in two days then he is clear but if they do, then he will have to be treated.
Carrie seemed concerned but very calm. Their doctor told them that this is not an uncommon occurance. Heath likely has an infection of some kind, they simply won't know until they get some lab reports back.
Carrie asked that folks continue to pray as Heath faces his next challenge. I will keep the blog updated as I receive new information. For now, we must have patience in waiting for Heath as he continues the hard work of healing....
Blessings,
"Gran" Sarah
Carrie seemed concerned but very calm. Their doctor told them that this is not an uncommon occurance. Heath likely has an infection of some kind, they simply won't know until they get some lab reports back.
Carrie asked that folks continue to pray as Heath faces his next challenge. I will keep the blog updated as I receive new information. For now, we must have patience in waiting for Heath as he continues the hard work of healing....
Blessings,
"Gran" Sarah
Settling In to Being Home
The Tuttles are settling in to their new routine and being at home. Carrie reports that Heath is thrilled to be home! Ella Brooks is pretty happy to have everyone home too! Heath had a good first night but was a bit fussy last night. They think the medicine might be upsetting his tummy. Administering the meds through the port has gone very well and Chris and Carrie have gotten used to their new "nursing" duties! Heath has enjoyed some special time with his Granpa Bob too!
Ella Brooks was going to enjoy a treat of having a sleep over with "Oma" (Carrie's mom) tonight. Seems she has a bit of pink-eye that she doesn't want to share with her brother so is enjoying a little one-on-one time with Oma and Grandpa Strow.
The Tuttles are anticipating the home health nurse to check in with them tomorrow. They were pleasantly surprised when their insurance case manager called them to see how they were doing! Thursday they go to the doctor for a follow up visit. I expect to have more info after Heath's appointment.
Heath is still scheduled for his routine heart cath. on Thursday, January 22. He is doing so well the doctors don't want to upset the regular routine tests that continue to check on his progress.
Keep the Tuttles in your prayers as they continue to adjust to their new "normal".
Blessings,
"Gran" Sarah
Ella Brooks was going to enjoy a treat of having a sleep over with "Oma" (Carrie's mom) tonight. Seems she has a bit of pink-eye that she doesn't want to share with her brother so is enjoying a little one-on-one time with Oma and Grandpa Strow.
The Tuttles are anticipating the home health nurse to check in with them tomorrow. They were pleasantly surprised when their insurance case manager called them to see how they were doing! Thursday they go to the doctor for a follow up visit. I expect to have more info after Heath's appointment.
Heath is still scheduled for his routine heart cath. on Thursday, January 22. He is doing so well the doctors don't want to upset the regular routine tests that continue to check on his progress.
Keep the Tuttles in your prayers as they continue to adjust to their new "normal".
Blessings,
"Gran" Sarah
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