In the Beginning

In the beginning....

Looking back, I see that I've written quite a bit about my feelings and the emotional take on the Joshua's illness. I think I should put things down in a more clinical medical perspective too.

I came across some journals I was keeping when all I could do was take notes. Joshua's home was the NICU and I traveled back and forth daily. Having a three year old at home made it difficult to spend as much time at the hospital as I wanted, but it was equally hard swallowing the feeling that my oldest son was being neglected. I called constantly to get the latest information on my little trooper when I couldn't be there myself. Reading through these thoughts and Joshua's stats is a painful reminder of the struggle we all experienced. Funny thing is, at the time I didn't really notice...

(These first two entries were jotted down a few days after his birth)
1. Find the right doctor
2. Accept the Disease, Don't accept the Verdict

May 5, 2006

Joshua's nurse is Carol
He weighs 5 lbs. 4.6 oz.
His weight loss may be due to phototherapy
He's off oxygen completely
His bilirubin is 7.8 (yeah!)
They had to stop feeds, his stool output was more than feed input

Questions to Ask:
Is the gastric tube in the intestine or the stomach?
Can Joshua drink water?
What is the difference in feeds going in by gastric tube and by mouth?

May 7, 2006
Morning nurse is Eva
He weighs 5 lbs. 3 oz.
His bilirubin is up a little
Evening nurse is Amy
They're not going to start back up feeds yet, will give him Tylenol at midnight for restlessness.

May 8, 2006
Morning nurse is Tracy
Joshua weighs 4 lbs. 12.8 oz.
His bilirubin is up to 11
He's back under phototherapy lights. They've started feeds back up.
I met with the wound care specialist. Will see her again tomorrow to learn how to change his jejunostomy bag.
Evening nurse is Jenny
He's doing fine with the feeds, his stools are the same.
He's resting well.

May 9, 2006
Morning nurses are Michelle and Jennifer
He weighs 4 lbs. 14.3 oz.
His oxygen levels look good and he's still tolerating the breast milk.
His bilirubin is down to 9!
Evening nurse is Ashley
Joshua is very comfortable, he's still under the phototherapy lights

May 10, 2006
Morning nurse is Carol
He weighs 5 lbs!
He's sleeping comfortably.
His bilirubin is down and he's off phototherapy lights again.
His feeds were raised to 3 ml/hr! TPN is off 4 hours of the day.
They've moved him to a real crib, he looks so great!

May 11, 2006
Morning nurses are Carol and Stacy
Joshua's gained 7 oz! Is it a fluke? We're not sure yet. Doctors will be increasing his feeds to 4 ml/hr tomorrow. Wow! Got to hold Joshua for quite some time today. He looked so good. He was in one of Caleb's blankets and looked just like him when we brought him home from the hospital.
I changed your ostomy bag all by myself - piece of cake!

May 12, 2006
Nurse: Lucinda
Joshua gained more weight! Now he's 5 lbs. 10 oz.
No other changes today. Blood sugar is looking pretty good, it does go down after his TPN is cycled off - but goes back up.

May 13, 2006
Nurse: Lucinda
Gained weight! 5 lbs. 13 oz.
No changes, still doing well.

May 14, 2006
Nurses: Lacy & Tara
Weighs 5 lbs. 15.1 oz.
Sleeping all morning, no changes. Still doing well.
Evening: Dr. didn't like the amount of stool being produced, so took him off breast milk to give his bowels a rest. Blood sugar dropped after that. When I came in this evening, the nurses had him in a bouncer. He seemed to enjoy that. His day nurse helped him make a Mother's Day card. Thank you so much!

May 15, 2006
Nurse: Katherine
Weight: 5 lbs. 15.6 oz.
I'm bringing some more t-shirts and crib toys for you. Kackie got to hold you today!

May 16, 2006
Nurses: Amber & Joan
Weight: 6 lbs. 1 oz.
I'll be watching today as the central line dressing is changed.
He took a bottle (a very small one) for the first time!

May 17, 2006
Nurses: Amber & Joan
Weight: 6 lbs. 4 oz.
The first two weeks were numbing and we all were digesting everything that was happening. Justin and I are meeting this afternoon at 3:00 with Joshua's surgeon. We've got lots of questions to be answered. Now we are at the point where we must be aggressively pursuing treatment and or the transplant.
1. Will we be turned down for transplant if we are on Medicaid?
2. How soon can we be put on a waiting list?
3. Does Medicaid always cover a transplant?
4. Can Joshua receive organs or partial organs from a relative?
5. Do we have to wait for liver failure?
6. How long, on the amount of TPN that he is receiving, do we expect it to take before he has liver failure?
7. Are there any other adverse effects from TPN?
8. Are there any support groups we can join?
9. Are there any organizations we should look into?
10. When will I be able to speak to the GI?
11. We've heard great things about Pittsburgh and Houston, what do you know about those hospitals and doctors?
12. Do you have any statics on small intestine transplant surgeries?
13. Do we have any other options?
14. Once bowels are reconnected, will he be able to have "normal" bowel movements?

We sat down with Joshua's surgeon and learned that transplants are the very last resort. We shouldn't even be thinking of that right now. There are other options. We may be able to allow his intestines to dilate, then do what's called STEP surgery to elongate the small bowel. This type of surgery could hopefully happen over and over until he has enough small intestine to fully function.
And leaving our meeting we now understand that there are not many aggressive actions to take with short bowel syndrome.
Joshua's G-Button was put in today. He's a little sore, it was pretty traumatic. He's also upped his feeds to 4 ml/hr.

May 18, 2006
Nurse: Rachel
Weight: 6 lbs. 5.5 oz.
Still tolerating 4 ml/hr.
Resting well.
Today I got to give Joshua a bath, change his ostomy bag, change the fluids in his central line and give him a bottle. Busy day!

May 19, 2006
Nurse: Katherine
Weight: 6 lbs. 6.1 oz.
Feeds were raised to 5 ml/hr.
His suture next to his central line was removed.

May 20, 2006
Nurses: Catherine & Liz
Weight: Gained! 6 lbs. 6.7 oz.
Took his bottle well, was good all night.

May 21, 2006
Nurse: Catherine
Weight: 6 lbs. 9 oz!
Joshua had a bath today. Afterwards his ostomy bag came off and Catherine had to clean him all over again! He's sleeping well, sucking on his passy.
Today his umbilical cord came off.

May 22, 2006
Nurse: Eva
Weight: 6 lbs. 8.8 oz.
He's awake this morning, looking around, being good.
Feeds were raised to 6 ml/hr, TPN stayed the same.

May 23, 2006
Nurse: Annette
Weight: 6 lbs. 9.2 oz.
Joshua's doing well, his bottle feeds are doing great! He's an old pro already.
Chem strips are looking good (blood sugar)

May 24, 2006
Nurses: Courtney & Liz
Weight: 6 lbs. 9.7 oz.
The doctors upped his feeds to 7 ml/hr and his TPN was lowered to 9. We're making progress!
Today was bath day, he was a little upset with me, but he smells so good!

May 25, 2006
Nurse: Tracy
Weight: 6 lbs. 10.8 oz.
Doing well. Resting, Geda got to come see him!

May 26, 2006
Nurse: Tracy
Weight: 6 lbs. 12 oz.
Had a good night.
Today I changed the dressing on his CVL for the first time!

May 27, 2006
Nurse: Cinda
Weight: 6 lbs. 12.2 oz.
Sleeping well.
Upped the feeds to 8 ml/hr!
Surgeon said he's very impressed by Joshua's progress! He's taking almost the same amount of milk as the TPN, Lipids & clear fluids all together!

May 28, 2006
Nurse: Cinda
Weight: 6 lbs. 12.3 oz.
Joshua's One Month Old!
He's a little irritable today.
Doctors lowered his TPN to 8.5 ml/hr.

May 29, 2006
Nurse: Cinda
Weight: 6 lbs. 12.9 oz.
Doing great, 19" long! That's a 2 inch growth in one month!
Doctors lowered clear fluids to 4 ml/hr.
I changed the dressing on his central line again today. I'm getting a little better.

May 30, 2006
Nurse: Michelle
Weight: 6 lbs. 12.9 oz.
Joshua's needing a little attention today. I'm bringing up his swing and a CD player. Hopefully we can keep him entertained!
Today he had lots of visitors. One of his uncles and two of his aunts!

May 31, 2006
Nurse: Gwen
Weight: 7 lbs. 6 oz.
Joshua's output was too high so they've bumped his feeds back down to 6 ml/hr and TPN is back up to 11 ml/hr. Hopefully this is just temporary. His nurse says he loves his music!

June 1, 2006
Nurse: Gwen
Weight: 6 lbs. 14.8 oz.
Doing well, output looks better.
TPN is 11.5 ml/hr and feeds are at 6.

June 2, 2006
Nurse: Tiffany
Weight: 6 lbs. 15.8 oz.
He was sleeping so well this morning, his nurse had to wake him to make sure he slept at night.
I gave him a bath, changed his ostomy bag and did his central line dressing change.
We had a busy night!
Doctors stopped feeds due to high output levels.

June 3, 2006
Nurse: Tiffany
Weight: 7 lbs. .5 oz.
Sleeping well, started feeds back up at 5 ml/hr.

June 4, 2006
Nurse: Tracy
Weight: 7 lbs. 4.7 oz.
Added Immodium to slow down Joshua's bowels.

June 5, 2006
Nurse: Tracy
Weight: 7 lbs. 4.7 oz.
Joshua's surgeon was at a conference with the top Bowel Specialists. They discussed Joshua's case and decided to go ahead with the reconnection surgery before he go home.

June 7, 2006
Nurse: Courtney
Weight: 7 lbs. 6.4 oz.
Doctors are adding sodium to Joshua's TPN. They will do the surgery around the 18th. While I was there, he wouldn't sleep. We rocked for an hour and he was still wide awake. He is so alert!

June 8, 2006
Nurse: Suzie
Weight: 7 lbs. 6.5 oz.
Today I changed Joshua's CVL dressing again. I'm bound to get the hang of it soon! They think his surgery will be the 21st.

June 10, 2006
Nurse: Cora
Weight: 7 lbs. 10.4 oz.
Joshua's GI came by for the first time today and ordered some tests.

June 11, 2006
Nurse: Cora
Weight: 7 lbs. 12 oz.
We changed Joshua's CVL dressing and started to just wash his hair when I noticed his ostomy bag was leaking. So, I changed the bag then gave him a bath.
The tests all looked good!

June 12, 2006
Nurse: Cora
Weight: 7 lbs. 13.6 oz.
Length: 19.25"
They're beginning twice a day to empty Joshua's ostomy bag into his diaper. The doctors want his little bottom to get used to the stool. OUCH!

June 20, 2006
Dear Joshua,
Today was your surgery. We rocked for quite some time before they were ready for you over at the children's hospital. They called at 9:15 am. Daddy and I walked with you over the skybridge to the hospital. We got to meet with the anesthesiologist and surgeon. It was so hard to leave you. But you were sound asleep. At 11:15 the surgeon asked us to come and speak with him. He said the surgery went very well. He was extremely pleased with how everything looked from your first one. He had no trouble reconnecting your small intestine to your large. No more ostomy! Praise the Lord it all went well.
I love you so much,