Friday, October 11, 2013

Update on Caleb 10/11/2013

Caleb Updates: 1 2 3 4 5 6 and the Final Update

I moved to updating here since the other page was getting so long. For my friends who are just hearing about it, the whole story is in the pages above. I am trying to put as much info as I can to help with questions.

Update 3:08 p.m. We were told last night that Caleb would have a procedure at 11:30 a.m. today to needle drain the larger abscess of the three they can see. By mid-morning, we didn't know if he'd actually have it today or not because there were so many changes and delays. 

When the Dr looked on the ultrasound, the abscess was too large for the needle. They had to put a drain in that one. The drain will stay in 2-3 days and will be flushed with saline 3-4 times a day to speed clearing the infection out. The drain procedure was necessary because it keeps his body from having to do the work to clear up the infected areas. It will speed healing.

They tried to do a needle drain on another abscess, and nothing came out. They say that happens sometimes, and it will probably reabsorb or drain out of the drain because sometimes they are connected. There is one they can not reach unless they do surgery. They are leaving it alone for now. There may be others they can't see, but they'd be smaller. If the antibiotics are working, then we should see some shrinking of these abscesses.

We are waiting on signs to tell us the antibiotics are working. Those are: a decrease in pain, more energy from Caleb, and a good appetite. All of those things have picked up a little bit.

Caleb is on all liquids again.

To get weight on him, when it is allowed, we are going to feed him nutrient dense foods, supplement with Ensure Adult to increase calories and protein, multivitamins, Vitamin C, high doses of probiotics, and we are looking into an appetite stimulator a friend told us helped her family member.

6:00 a.m. 10/12/2013 Prayer request: Caleb is in a lot of pain. Please pray for relief.

Update 10/12/13 12:50 p.m.: We finally got a nurse who was on the same page with us about Caleb needing rest. We believed that if Caleb could get some sleep, his pain would be less, and he'd feel a lot better. Bless her heart, Nurse Nicole delayed what she could to give Caleb time to sleep. He slept until about 11:30 this morning. He feels and looks so much better! And, he is ravenous! and allowed to eat!! Praise the Lord! He is still tired and still has a long way to go, but both are very good signs. He was also taken off the IV and allowed to walk around. He took a trip to the playroom, but tired out after about 45 minutes.

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His first solid food meal tray had bacon! He was happy!

Update 10/13/2013: Caleb is eating more, has less pain, and is able to move around more. Doctors have not said the antibiotics are working and will not speculate on when he can go home. We are hoping they will tell us something tomorrow. Caleb had some itchy red spots on his back last night that looked like the beginning of a fungal infection to me. I asked Clint to bathe him as best he could and keep an eye on those spots. Caleb has a PICC line and drain, and has been too sick to bathe except for a few quick wipe downs. 

If my tired brain is right, Caleb has spent eight nights in the hospital so far with two nights at home in between. He was sick for three days before that. Doctors say his recovery will take a while. To prepare those who see Caleb: You can count every vertebrae, see every rib, and his collar bone area is like two deep bowls flanking his neck. He is emaciated, but should pick up weight quickly once he is home and on the plan mentioned above. Even though he has had EXCRUCIATING pain that made him turn white as a sheet, he has not complained, not even ONCE. 

I was able to spend time with Caleb on Friday night through Saturday evening. I came home last night because the workload here is stacking higher and higher. The weather has changed; we need our winter clothes down. Our critters need care. The people at home need food cooked. Caleb needs a place made for him to receive in home care. I need to do grocery shopping..and so forth. Work is piling up, but I'll be able to knock a lot of it down quickly.

Update 11:17 a.m.: CHKD grew culture of the material in the abscesses. This will let them customize his antibiotics to his specific infection. I like that they are dealing with specifics. He may go home in a couple of days. They want to be sure he is improving before they send him home. They also took out his drain line. That sounds easy, but at the end, the drain is wider than the skin it has to pass through. It hurt him bad enough they gave him morphine again. Caleb told us he wants to get home as soon as possible and feels he can get better once he gets away from the stress and noise of the hospital.

Amanda works at CHKD Thrift Store. Her manager has been hassling her because she was needed for 3 days to help out with her very young siblings while her parents took care of and made decisions for her brother while he was in CHKD hospital...which is about 2 hours from our house. They told Amanda that she could be FIRED if her family needed her help again. No kidding!!! You'd think they'd be a little more understanding!!! The SOLE PURPOSE of CHKD Thrift stores is to SUPPORT the children and families that are there! I can not believe the lack of concern or compassion from Amanda's bosses.

On the other hand, my son's boss Frank at Franktronics, has told him to take care of his family first and foremost and not to worry about his job. This has Brandon bending over backwards trying to keep time in at Franktronics out of gratitude for his understanding. Frank has not only been a blessing to our famliy during this hard time, but has earned our loyalty, respect, and high recommendations.

Update 6:34 p.m.: Clint explained more of what happened this morning to cause Caleb extreme pain. The surgeon commented several time to Clint that it should not hurt that bad and he had no idea why it was. When he got it out, he saw that a wide loop had been put into it by the person that was ordered to install it. It was installed differently than the orders the surgeon gave! Caleb had a small hole leading to the abscess, so the loop made him really hurt all the way through as it came out. As soon as the Dr saw the loop, he ordered the strongest dose of morphine Caleb is allowed. Caleb went from Tylenol with Codeine back to the big dose of morphine because of someone's mistake. The surgeon apologized profusely many times. This is not the only "mistake" that has happened to cause Caleb more suffering. Please pray Caleb is well enough to come home asap. 

The good news is that Caleb has shown more improvement today after he recovered from that. Having his older brother and best conspirator, Joshua, at his side is good medicine!

Update 8:45 p.m.: Caleb has gained 1.1 lbs in 24 hours. This is a big deal and a definite step forward! Thank YOU, Lord!

Update 11:44 p.m.: I talked to Clint, Joshua, and Caleb on the phone. Caleb sounds stronger and happy! Clint said he can see the changes in Caleb. Caleb looks better and has much more energy. He has explored 4 different floors of the hosptial tonight. Yesterday, he got tired after playing a video game in the play area. He told me he is bored and wants to come home now. This is a huge transformation. I am a happy mama! 

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Update 10/15/2013 9:34 a.m.: Caleb came home yesterday afternoon. It was a very busy day. He has a PICC (peripherally inserted central catheter) so we had to meet w/ in home health care to learn how to flush his line and give him antibiotics 3xs a day. The antibiotics will last 10 days, not the "2-3 weeks or longer" we had been told to anticipate. He looks better, feels better, sounds better, and he's eating! PTL!!

I did my first PICC line last night. There are lots of little steps to remember, but it is very easy. My plan is to weigh him daily and take pictures of his progress. 

When we were told to order Caleb's first meal from the cafeteria, we had nurses warn us about how much junk was on it. I think the hospital's goal is to get the children, most of which eat those things at home, to eat anything they will so they serve foods that are very likely to be consumed. Clint's and my goal isn't to just to put weight on Caleb. We are concerned with getting him healthy so his immune system will be able to fight off infection this winter. As weak as he is right now, a cold could easily turn into bronchitis or pneumonia. Clint and I don't want that. Real mashed potatoes with real cream and butter will put weight on Caleb and get nutrition in him better than the pop-tarts and ginger-ale he was getting. Yogurt with blueberries will serve him better than Jello. Fruit is far better than Oreos. Again, I am not faulting the hospital for their choices because for some children, that is all they will eat. I am focusing on true health rather than appearance and on doing what is best for my child over what is "fun" or "popular. Finishing this round of antibiotics and rebuilding Caleb's body with good nutrition are our new goals.