Daylight Time Ends

For some it is an extra hour of sleep, for us it is an extra hour Colleen has in the hosptial. Blood was drawn this morning. If everything remains negative, then she can be discharged this afternoon. She is going home on a new antibiotic and she needs to get one dose here before sending her home. Any reactions to the new medication should happen here in the hospital and NOT at our house. On Monday she will have to be back in clinic.

Sunday ??

Maybe Colleen will be allowed to come home on Sunday, she did vomit one medicine at Ten this morning.

Maybe Home Sunday

New something yuckie "gram negative" is growing in Colleen's Wednesday cultures. So now the earliest discharge is Sunday, if everything else cultures negative. Rats.

Update

Colleen's Thursday cultures were negative. If Friday's are negative there is a possibility that she can be discharged on Saturday. It all depends on what "grows" in the labs and if she stops having fevers. They don't consider anything under 101 to be a fever, so she could come home with low fevers. She did not have any more fevers after the early morning of Thursday, so she is otherwise doing very well. She played well yesterday and spent many hours in the isolated play room enjoying the toys and the volunteer who played with her and mom. The green diarrhea continues and that is a concern. They are treating her for C-diff (she did have while undergoing the BMT), although she has been negative for that germ ever since late September. As she is feeling better her frequent statement yesterday was, "I don't want to be here".

low fevers

Both lumens of Colleen's Broviac were infected, but not her port. We dislike the broviac, and want it out as soon as possible. The discussion was it could come out after she is done with the TPN I.V. Feedings. Just when she was starting to eat a bit more, including protein foods, and the nutritionist discussed ending the TPN within the week (at clinic on MONDAY), she goes and gets sick! This morning her port isn't drawing blood, although it flushes, that is all we need at home if it is accessed, and her port was NOT infected. She continues to have low fevers, 99 or 100s. Not very "bright-eyed" today, I suspect her fever will go up again this afternoon. Thank you for your prayers.

Colleen back at Mott

Colleen had to return to the hosptial Tuesday after she began vomiting and had a low fever. Once there, her vomiting had stopped but her termperature rose to 102 oral. She was admitted so they can determine whether she has a virus or just a reaction to meds.
Susan stayed with her last night.
Dad

One week later, all systems "Go"

Thank you for all the prayers, please keep praying for our family.It is so overwhelming. Plus, we have had quite a week. Colleen came home last Wednesday night, October 12. The refrigerator supplied by the home medical service quit working so all the meds and nutrition inside had to be replaced. Thursday, October 13, we met Ben's new caseworker. Friday we returned to the hospital CLINIC with Colleen.The furnace kicked on for the first time this season, but then did not go off. The visiting nurse's car died in our driveway onSaturday. Colleen also had lots of blood in her diaper on Saturday and a low fever on Sunday. Colleen visited the hospital CLINIC again Monday. She had diarrhea all over the chair in the blood draw clinic. Very embarassing. Also, Susan discovered NO change of clothes in the diaper bag, additinally her coat was covered in "muck". Meds and nutrition was adjusted very slightly, and she filled another diaper for the doctor and nurse, complete with blood for them to see. We left CLINIC with a new shirt and pants and a blanket. We had planned to return the blanket tomorrow, but Colleen thinks they gave it to her, "my blankie". When all is said and done, her BMT will be in the six figures, I suppose the blanket is hers, bought and paid for!
Ben and William visited Dwayne, their half brother, at the new agency on Monday. We called for furnace repair Monday morning. The tech was supposed to arrive by 3 PM, so tech "Dave S." arrived at 5 PM, an hour after Dad had left to take Ben (and William) to the sibling visit. Not only was the furnace not repaired, but the tech left it NOT FUNCTIONAL at all, and the pilot light would not stay lit. Fortunately, Monday night was not that cold. One extra blanket for everyone kept everyone warm. Tuesday a new tech repaired the pilot light.
Colleen is finshed with her flagil antibiotic dosing Monday night. Most meds are oral now, with the exception of one medicine we add to her IV food. Colleen goes back to CLINIC tomorrow.
Mark and Susan

Discharged

Colleen was discharged Wednesday evening. We have IV food and IV antibiotics to give her. Very overwhelming. The visiting nurse came, Mark and I were "squabling", we discovered at 6 AM that the refridgerator the med supply company delivered is BROKEN, the medicine in the fridge has to be pitched. New delivery expected. We are hanging in there. "Runs" persist, no fever, no vomiting meds today so far. Thank you for your prayers.

Colleen and Daddy enjoy a weekend together

Colleen was with Daddy most of the weekend. Many hours in the playroom now that she is willing to keep her mask on. Also, hours of reading.
She finally began eating again. In addition to chocolate milk she ate some banana and some peanut and butter sandwich. Yippee! She is still having the "runs" but not excessively, and she has NOT vomited since Friday. They returned one of her IV meds to oral Sunday night, so we'll try round two of "keeping it down". Sunday morning, the doctors were again talking about her going home within the week, but it is still one day at a time. As we've heard this before, we are not going to get overly excited.
Colleen had a good weekend, although at 10 PM Sunday night she suddenly complained about stomach/belly pain. It was sudden and severe, she had tears, couldn't get comfortable, and her nurse called the doctor. Just before he came she got tylenol and a warmed compress, which soothed her enough to let the doctor examine her. Nothing out of the ordinary was "palpated" and she went to sleep shortly after that.
On Friday her hemoglobin was 9.9 and she usually gets transfused below 10.0, but her doctor held off to see what would happen. Saturday morning she only dropped to 9.8, so she was not transfused again to see what she would do. Sunday morning she jumped up to 10.2! She is now making her own hemoglobin! This morning she is at 10.1, white blood cells are 5.3 (6-15 is normal, she was 6.1 Sunday), and her platelets are 98 (were 110 on Sunday). No platelet transfusions unless she drops below 40, so it appears that she is now making her own platelets too.
In the meantime, God blessed us with NEW friends who just happen to have a housekeeping service. Mark and I met Lisa at a foster parent training class in September. Lisa and her husband Darin are foster parents for the past seven years and have experienced much of what we've been through recently. On Saturday, they came to our home and we paid them to clean top to bottom. They really earned their money, and spent eleven hours helping get our home ready for Colleen, and it was their 10th wedding anniversay too, we found out. They are Christians and if anyone wants their cleaning information, I'd be happy to share it. They are definately good stewards of their skill. They washed ceilings and walls, doors, and floors, everything (and I mean everything) got dusted, polished, scrubed, cleaned, even windows! Wow. Darin even took a few minutes to give Ben a "talk" when he got a little "out of sorts" at one point. God bless Lisa and Darin.
Please continue to pray for Colleen and for our family.
Susan

Friday Update

Colleen continues to have vomit and "runs", but NO GVHD, praise God. She does have an infection in her rectum and intestines, and trouble absorbing some of her oral medications. Many of her meds were put back on the IV. She had a slight fever last Tuesday evening, but no more fevers. She can't come home though, until she eats a little bit and stops the vomit and "runs". Her hemoglobin was 9.9 and she will get a transfusion tomorrow, instead of today. She got platelets yesterday and it bumped her up to 144!! She is making her own platelets now, excellent news.

NOT GVHD

Colleen does not have graft vs. host disease, praise the Lord. She does, however, have an infection in her rectum and large intestines, probably viral. We are told it is treatable, although she can't be discharged until this is under control, and she starts eating again. Good news, her platelets held on for FOUR days!!! She got more platelets this morning, last time was Sunday afternoon. She also has had her platelets "threshold" lowered to 40, doctors want to see how long she can maintain above 40, as she has been 50 (cancer patients can drop to 10). They don't want her to get too low, but if she is hovering close to 50, that is acceptable at this point.

vomit, etc

No word yet on the biopsy results. Colleen's platelets are holding on. However, this morning she awoke vomiting at 8 AM. She is still vomiting. She kept a couple of medicines down, but lost the immodium that could help the "runs". Please continue to pray for her healing of her sickle cell disease and her recovery from the bone marrow transplant.

GVH??

It looks like Graft vs. Host disease in Colleen's rectum. No pathology results yet. She vomited twice today. Some of her oral medicines are back on the IV. Her food is IV 100% still. Her platelets are 77 this morning, so she is FINALLY holding on to them for an entire 24 hours!! Praise the Lord. She is NOT running fevers, but the "runs" continue. Keep praying.

OR today

Colleen was taken to the OR for a GI procedure (both ends). She got very sick last Thursday night, vomiting. The vomit hasn't been too much since, but the "runs" have not gone away. The concern is gut graft vs host. We should have the pathology results tomorrow. Some inflamation in her esophagus and stomach, and colon and rectum. Could be an infection or something minor too.

Colleen has not been eating. She has been put on a clear liquid diet, and milk has been stopped. She continues to have "runs" and may have Graft vs. Host disease in her gut, or it may just be trouble digesting the lactose in milk. Thursday night was the last time she vomited, however, she isn't drinking very much either. Tomorrow the GI doctors may do a surgery on her to take samples from her stomach and small and large intestines. They will have to go into both ends. She would be under general anesthesia. We won't know until Monday morning what the decision. She received platelets this afternoon. She has only needed one transfusion per day for several days in a row, an improvement. Please continue to keep her in your prayers, and our family as well. The stress in our home is "overwhelming" at times and we truely appreciate the prayers. Thank you to all who have brought us the wonderful meals and those who are helping with our children. God bless you all.