Bumps in the Road

Colleen had to have a Barium x-ray test on Friday. Her anatomy is fine. She is responding to the steroids, however she got a blood infection and came down with a fever of 104 on Sunday night. The fever continued through Monday morning, but was lower by the afternoon. They identified the bacteria in her blood. She got her port needle changed on Saturday, and my guess is that is where she got the germ. Daddy spent the night with her and Aunt Edna is with her today. She didn't eat very well yesterday, but that was not unexpected with the fever.

UPDATES

FROM: Sunday 2/26/06 5:53 PM
She'll be hospitalized at least another 3 or 4 days. Some of herlabs are a bit "off" and also the steroids have made her bloodpressure go up. She is now getting all her nutrition by IV, and theyare tapering it down to 12 hours so that she can go home on 12 hourIVs and not 24 hours per day. The steroids have worked! Herdiahrrea has decreased tremendously! Everyone is very happy this hasworked so rapidly. Of course, six months of chronic diahrrea beforethey get the "right" treatment isn't exactly rapid, but that is whyit is the "ART OF MEDICINE" and not called the SCIENCE of Medicine.Thank you for all of your prayers.

FROM: 2/23/2006 8:37 PM
Colleen's biopsy results are back, while she does NOT have Graft vs. Host disease, the news isn't very good either. Her digestive tract is very assulted. She has what "Looks Like" Crohn's disease, but the docs are quick to point out that with her immune suppression and BMT, it may not actually be Crohn's. It is likely she had an infection (C-diff in late September) and her digestive tract never recovered. And that interfers with absorption of the nutrition (explains her difficulty to gain weight). She is being treated for Crohn's disease with steroids, and also several medications that she had been weaned down on or had been discontinued (part of her BMT protocol) are being started again. In addition, her diarrhea cultured positive for another infection, roto virus (sp?), probably what made her sick with vomiting which began last Sunday. COLLEEN is a VERY SICK little girl. She is being "hydrated" and IV nutrition has been started again. In addition, to make certain they have looked at her digestive tract as best they can, she has another procedure scheduled. An "upper GI" barium xray study, so that they can see her entire intestines with the radio-opaque dye, is Friday at 11:30 AM.

Colleen Admitted

Colleen was admitted today to Mott Hospital for continued vomiting and dehydration.

Thank you to everyone who is praying for our family. Colleen had the surgery this morning, lots of "irritation" in her esophagus, stomach, and rectum. To complicate things, she caught the "bug" that Wm and JJ had this week, and Colleen started vomiting on Sunday, hasn't stopped. They did not want to postpone the procedure today, as there is no fever, she's just not keeping anything down. She lost more weight. She had her weight up to almost 28 lbs last Tuesday, and was eating very well through Saturday, but after over 48 hours of vomiting, today she was 25.5 lbs. She returns to BMT clinic on Thursday, and we should have the biopsy results this Friday. Thank you again for your prayers. Please continue to pray for her, especially to get over this "bug", because everything hits her harder and stronger. Amoxicillian doesn't work on a virus.

Colleen saw the gastro doctor on Friday February 10th. She is going to be in the operating room next Tuesday February 21 to be scoped "both ends". Scheduled time is 10 AM. Her diarrhea continues, when we stopped the immodium (per doctor's orders) diarrhea poured out of her, so it isn't the magnesium after all and the immodium definately helps her. They are concerned that she has GVH (graft vs. host disease) in her gut. We are asking for prayers. She was scopped and biopsied last October and she "looked" like GVH, but the biopsies were all negative for GVH. Please pray for her, GVH is BAD BAD BAD. Sometimes in a cancer bone marrow transplant (BMT) they want a "little bit of GVH" to get the body fighting, but NOT in sickle cell transplants. If this is GVH, she will be treated very agressively, and WITHOUT the immune system "immuno-suppressants", and her risks will increase a hundred fold.

Mark won't be here this week. We had our summer vacation pre-empted by the corrupt child welfare system when they tried to take our foster son away from us last June (still not adopted, but still with us). Mark is taking three of our boys to Florida today to see our oldest son Mike, who is working at Disney World. So, daddy won't be here when Colleen goes to the operating room Tuesday. I would NOT let him reschedule the trip, and the airfare is not refundable, and it took six weeks to get travel authorization for our foster son, and we NEED a vacation even if it is only half of our children still at home, etc.

Here's the "bitchy" mom (also known as "Mrs Sweetman you are such a good advocate for your daughter"). Colleen's BMT doctors wanted her to see the GI doc immediately after her February 7th BMT clinic appointment, as she had STOPPED eating and was LOSING weight again, and we tried stopping IMMODIUM which made her worse. I called GI and they said "We will see her the end of MARCH." Unbelieveable, because the receptionist can't get her an earlier appointment. So I didn't argue, just called her BMT doctors. THEY made her an appointment for Friday the 10th. (Why do parents have to pull rank to get the medical care required?) She saw the GI doctor and he wanted her back within two weeks, he did NOT want to "wait" too long. I went to check out to make the follow up appointment and they couldn't give me an appointment in two weeks, "We can see her back in April", so I said I would call back the next week, which I did without success. I told her BMT doctors that the GI doc wanted to see her by February 24th, but they won't give me an appointment until APRIL. BMT concured that was inappropriate and told me to call GI back. I called back and STILL, "Let me schedule her for April, and then we can change it later" says the receptionist. I told her that won't work, and hung up without a follow up appointment for Colleen. So I called the BMT doctor back and told them I couldn't get a follow up GI appointment, strike three for mom. BMT called the GI doc, and she got not only the appointment, but the surgery scheduled one week later. Do receptionists think we are LYING when we say the doctor wants our child seen within such and such a time frame? WHAT is their problem? Are they incapable of just picking up the phone and ASKING the doctor if he really said this patient needs an appointment by this date?

For the record: Colleen's pediatrician and the whole staff at that office are WONDERFUL. Colleen's hematologists and the whole staff at that office were WONDERFUL, and we still attend the monthly support group. Colleen's BMT doctors and the whole staff there are WONDERFUL. Colleen's inpatient doctors (only one exception) and the entire staff on 7 Mott are WONDERFUL. The GI staff, NOT.

Colleen was back in clinic again today, going every one to two weeks. Her skin has been very dry and her weight is NOT up as it should be. She was given a prescription for an appetite stimulant, that will hopefully help her get her HUNGER back again. She may need to see the GI folks next week, as a few of her symptoms point to Graft vs. Host. Her hemoglobin is up to 9.9, after haven fallen during her illness and hospitalization last month, so that is excellent. The IVs at home are going well, and Susan has now accessed her port THREE times. The visiting nurse intends to observe Susan one more time, and then we are ON OUR OWN. The most difficult part is keeping STERILE hands. Touch one thing that isn't sterile, and you are then "contaminated". Colleen is so cooperative, having this port since she was 17 months old, and getting it accessed every month, that she is an angel for inexperienced mom to work with. At least she knows the routine, even if mom is a bit awkward at this every week!