March 19th- Called her pediatrician to see what she thought I should do. We went in to have some tests ran on her. I have learned Adi’s not the normal child and appreciate talking to doctors who know her personally. Dr. Kendall knew there was an infection we needed to find- Adi was cathed for a urine sample, poked for blood test, and then sent for a chest x-ray. Heavenly Father takes care of us and shows it in so many ways— As I was walking down to the lab I ran into Karen Spear – she is a nurse for the agency I work for and Andrew’s mom (one of Scott’s friends). Karen was on her way to drop off some labs and asked if I’d like for her to stay with us. What she didn’t know is that inside I was freaking out, tired and so sad I wasn’t going to be able to be by Adi when they took the x-ray because I am pregnant. Timp hospital has this little cage contraption they place her in which scares her so it was nice that someone was going to be near her she knew and trusted. After experiences where she is taken by a nurse or just anyone with scrubs for tests, without someone she knows, she tends to have night tares and restless sleep for the next couple of days.
As I was leaving the hospital I got a call from Dr. Kendall telling me Adi had pneumonia and her urine sample showed she was dehydrated. I returned to the office and Adi was given a shot of rocephin and then was to start azithromycin for four days.
March 21- Saturday, the antibiotic had caused Adi major diarrhea. I had called the after hours line to ask if there was anything I could do. I was told it was normal, to hold out for two more days, and follow the brat diet.
March 23- Grandpa’s funeral was a wonderful experience. Grandpa led a wonderful life and he has left a legacy of great faith and love. I don’t know how people deal with death outside the church. Gospel principles bring peace and happiness. I know Grandpa was more than excited to be reunited with Grandma and be free from the limitations of the human body. I wish I could have seen just a moment of that reunion.
Since Friday night Adi had been lethargic and would not hold her head up for more than a minute. I was relieved Laurel was in town so she could give me her opinion on what to do. Here is the email Mel sent out to the family about what happened next:
Sent Tuesday March 24th
After the funeral luncheon, and an inspection from Laurel,
Scott and Anna took Adi to the hospital. They gave her an
I.V. of fluids and with the hydration she immediately perked
up a little bit. They tested her blood and found her white
and red blood counts very low. They said the blood test
could possibly have been too diluted (their mistake) so they
would try again the following morning. They were also
considering that she had never had pneumonia. This morning
they took another blood test and the counts are all still
low. They now do believe she has had (and still has)
pneumonia, and are now looking to see if she has a virus
that is suppressing her bone marrow and causing the low
blood counts. She will be in the hospital for 2 to 3 days.
Adi will most likely have more blood work done before she
leaves and if there is still not a definite cause for the
low counts found, they will do blood work once a week. I am
a little hazy on those last details. I will send this out and anyone
with any corrections or extra details can feel free to share.
It was great to see so many of you yesterday!
love to all,
Melanie
Dr. Kendal came in and told me there was no way the blood test numbers had been wrong. Another blood draw that morning confirmed the results of the previous day. The admitting doctor the night before had told us the only way her counts were as low as they were was a virus was suppressing the bone morrow from producing or she had leukemia. Dr. Kendal confirmed his statement and told us we just needed to wait to see what the snot test results were, which tested for a varity of different viruses. At this point we just don't freak out when they give us such "worse possible scenarios" diagnoses.
March 25-
The snot test came back and it showed it was RSV. After having sent the x-rays to Primary Children’s, a radiologist compared other x-rays to the one taken at Timp and concluded the haziness they found on the Timp x-ray was consistent with other x-rays previously taken. It seems that what they called pneumonia was probably just scare tissue from her surgeries.
Blood results from the day showed her blood counts were going up but still low. The bone marrow was making infected cells so – not going home for about two more days.
March 27-
Here is another email from Mel to the family:
Adi came home from the hospital this morning. Her blood counts are up--HURRAY! She seems to be in the last stages of this virus. A few days ago they decided it was not pneumonia at all but RSV. Scott and Anna have a blow by oxygen machine for this evening if Adi's oxygen levels drop low in her sleep, but other then that she seems to be doing well.
Mel
We had an appointment to meet with Dr. Rollins, the surgeon, next Friday the 3rd and have an esophagram study done to see what progress her esophagus has made. I called and told them what had been going on with her health and rescheduled for the 17th.
April 17th - Man, I love Scott!!!! He decided he needed to come up with us. The esophagram was scheduled for 8:30am and then we were to meet with Dr. Rollin’s after the radiologist’s finished his report. The esophagram went smoothly. Adi had to drink about two ounces of barium and as many of you know this little girl doesn’t like eating/drinking without seeing someone else doing it with her. Scott being the amazing father he is took several sips in order to help Adi drink enough.
Our hope was that her esophagus with all the eating she’d been doing, had corrected itself- the motility and shape had become normal.
The results of the study came back showing the motility and shape had both worsen. According to the surgeon we have two options:
1) To not do anything-- her esophagus will eventually stop working and she will be on a permanent g-tube, or
2) We have one more chance with surgery where a g-tube would be placed to supplement feedings until she hopefully can start gaining weight and the esophagus starts working correctly.
Scott and I asked all the questions we could think of. One of which was what he thought was causing the problem. He thinks but can’t know for sure, that her stomach has re-herniated. Scott asked if it could have been caused by her esophagus being too short. He said he would consult with his colleagues to see what they thought. If the esophagus is too short there is a procedure they can do to lengthen it. He would want her to be a little older before he did it.
I have to admit after talking to the doctor I felt discouraged. I just want the best for my little girl. Two nights after meeting with the doctor, Adi woke up screaming and squirmy. I took her out of the room so that Scott could continue sleeping, placed her on the floor to change her diaper, and she just zonked out. I changed her diaper, made sure she was breathing and went to the back room to cry. I hit my knees in prayer just asking for help to know what to do for this little girl. It is hard watching her in pain and not really knowing why.
Hope- To make a long story short these last three months have brought a lot of hope. Merlin has been great to have us work with Jim. Out of everything we have tried Jim has produced the best results. Adi started sleeping through the night (as long as she is feeling well). She is standing for about 2 minutes and just looking happier and healthier than ever. Doctors and specialists who have been working with her for most her life have commented she is looking the best they have ever seen her.
Adi has learned the hand movements to popcorn popping, patty cake, the itsy bitsy spider, and two little Spanish songs. She has learned many signs in sign language and will remind us to pray before we eat.
We have come to the conclusion that sometimes doctors give you the worse possible scenarios before they really know what’s going on. We have decided to take what they say into consideration and put our trust in the Lord to make the best decisions as a family about what we will do about Adi’s esophagus and growth issues. We will be meeting with an endocrinologist who comes highly recommended by some friends and will meet with the surgeon a couple of months after to discuss what we have both found out and have more of a definite plan about what we are going to do. We thank you all for your prayers in our behalf. We have seen the hand of the Lord in this process and know we have received the strength to continue in this long journey as a direct result of it.
