Infection again :(

Monday night we ended up back in the hospital. It all started Monday afternoon when his nurse came to take his labs and check his dressing. The dressing had some green discharge on it so she changed it and it was red and tender. She said it looked infected and needed antibiotics, so she called and left messages with his GI doc and surgeon. At 5:30 I still had not heard from any doctors so I paged his Pediatrician to tell him the issues. He called the surgeon on call and they wanted us to bring Zach over to the ER. We were supposed to be at the hospital at 6am on Tuesday for his motility test and upper endo.
We came to the ER and they took blood cultures and bloodwork and got us admitted. Luckily it looks like the infection is just local to the site of the central line. They started him on iv antibiotics and said we would be here for at least 48 hours to make sure the blood culture was negitive. They also canceled his motility testing AGAIN :(
He is doing really good though, no fevers!!! Which is good, cultures are still negitive. Hopefully he can go home on Thursday or Friday. His motility test got rescheduled for June 7 under sedation instead of anesthesia so he can't have his upper endo at the same time. After an infection you have to wait 3 weeks before you go under anesthesia but the doctors do not want him to wait another 3 weeks so we are going to do the sedation for the motility test and then do an upper endo in a month.

A vacation finally

We finally got a little vacation from this crazy mess of a year. We went to Cherry Grove, SC and spent a wonderful week down there. It was wonderful for everyone to just get away without doctor appointments or the hospital.

Even with Zach on his TPN 20 hours a day, it did not slow him down a bit on the beach. Him and Luke loved the sand and the ocean. They loved jumping waves and playing in the little pools that the tide would leave in the sand.

Could he look any happier? I am so glad he got to get away before reality hit again.

We visited the Ripley's Aqaurium and they both loved the fish and sharks. Zach's favorite part was seeing all the "Nemo" fish in the tank. We also visited the Alligator Adventure and saw lots of alligators, birds and other animals.

It was a great time and much needed by everyone. The boys cried when it was time to go home but hopefully we can go back soon.

We are home

Yes, we have been home for a little over a week now and it is so great. Being in a hospital for 34 days was exhausting, not that we did much but emotionally it was draining. All of the ups and downs and no diagnosis was horrible. Zach was so sick, and the reasons we went into the hospital never even got addressed due to unforseen circumstances that kept popping up.

We went through 3 surgeries, 3 anesthesias, 2 central lines, a blood infection, numerous x rays, a heart echo, a blood transfusion, a night in PICU, a horrible virus and the whole time with fevers of 103-105. We got discharged when the fevers broke, no growth on the blood cultures and to come back in a few weeks to have his motility test done. He does go back on May 24th for his motility test, we have to be there at 6 am and he stays overnight hooked up to the machine measuring his stomach and intestinal contractions. Hopefully we will have some answers after all the testing is done.
Even with all still going on, he has been doing pretty well. He has gained 3 lbs in the last few weeks!!! That is amazing and we are so happy. He has been 22 lbs for over a year even with g and j tube feeds and now being on TPN 20 hours a day he has gained. He is now 25 lbs!! We never thought we would see him with chubby cheeks and little fat arms or not being able to see his ribs. So even though he has to play in the yard pulling around his little blue bucket with his tpn (milk) and pump in it, he is soooo happy.

Thank you so much to everyone for all the prayers and thoughts during our hospital stay.

Zach's picture is featured at the 4:38 mark. This is a wonderful non profit organization promoting awareness and research for Eosiniphillic disorders.

Long Hospital stay Part 2

So after 3 long weeks we are still at Brenner's with Zach. A lot has happened, both good and bad but we have not had much progress with the original reason we came here.
After the 2nd week of having his central line in and working and getting TPN through it, he got a major blood bacteria infection. His temperature spiked to 104, he was shaking and throwing up and very listless. His blood culture came back positive for staph and gram positive bacteria. They started him on 2 major antibiotics used to treat MRSA. They continued to take blood cultures everyday and for 3 days his cultures continued to be positive for staph and he continued to have a 104 fever day and night so they pulled his central line on day 4 of his infection. They added another antibiotic and the next day his fever finally broke and stayed gone.
They took him back to surgery 3 days later to have another central line placed. Everything was going good for a week. The day that he was supposed to go have his motility testing done, he woke up with a 102 temp so the test was canceled since he would have to be under anesthesia to have it done. The Dr.'s are working on getting it rescheduled.
Tuesday night he became very modeled looking on his hands and feet and they were also very cold so the on call Dr's ordered more bloodwork. Yesterday they decided he needed a blood transfusion since his hemoglobin was low on the bloodwork. They said his hemoglobin is low because for one he has a chronic disease and for two, they have been taking a lot of blood over the past couple of weeks.  He was givin pre med first since he is allergic to everything. The transfusion only took about 2 hours and did great, he slept through most of it. He unfortunately woke up with another 104 fever so they took more blood cultures and repeat bloodwork.
So far his blood cultures are still negitive for bacteria, which is good. His hemoglobin came up about 2 points, still below normal but much better than the night before. They don't know why he is still spiking high temps and looking bad so they started on an fungal medicine just in case, they also took a fungal culture but it might take a couple of days for results. About mid morning, he became very modeled looking again, had very cold feet and hands and running a high temp so they decided to move him down to the ICU floor to keep a better eye on him. He is actually in the pediatric intermediate care unit, which is a step down from the intensive care unit but right next door to it just in case.
He is having ups and downs today, his vitals are still kinda shaky so he has to stay hooked up to monitors all the time.  His fever comes and goes. They said if it is a fungus causing the problems, we should see improvement within 24 hours so we will see what happens.

A long hospital stay

Saturday April 2
Zach has had a rough past couple of days and today we went to the dr again after a night of vomiting...if he continues to vomit, have pain or anymore blood venting from his g tube..he will get admitted and get a central line placed this weekend for TPN. Please pray they can figure out what is going on..he has lost 1/2 lb since tuesday.


Update**
We are at Brenners, he is hooked up to an iv line for fluids and they gave him some meds in his tummy just in case he has bleeding it will coat his tummy. Tomorrow his Dr will come by and discuss further treatment/options, I am guessing about putting in the central line for tpn. They also took bloodwork today. I know on Monday he is getting scoped to check for bleeding and obstructions. I hope they go ahead and do the manometry testing as well.

He just threw up about 30 minutes ago, and is getting nothing but pedialyte and fluids so not sure what is up with that. They are going to let the drs know.

Update** Sunday  April 3


Zach threw up each time they gave him medicine and then again for good measure. The plan today is start his feeds at 10/ml and hour for 4 hrs and then up to 20/ml hr. (They are going to mixing his formula at a lesser concentration too) If any issues, vomiting or pain then they stop. The dr has already talked to his surgeon about putting in the central line if they need it. He will talk to his colleges tomorrow morning and see if they can do his motility testing this week, if so then they will do the scope and testing at the same time. If not he will just do the scope tomorrow. So we just have to wait and see how today goes but it looks like we will be here for at least this week. He is all puffy from the iv fluids so his weight is up...unfortunatly I know it will drop once he is off the iv. They think at least the meds they gave him helped a little before he threw them up because he hasn't thrown up any blood, we will know for sure when they start his feeds and hook up his venting bag to his g tube.

*Update** Monday April 4

So Zach is going into surgery at 1pm for an endoscopy to check for bleeding, manometry testing and to have a central line placed for tpn. I hope the testing will reveal some answers about him not tolerating feeds. I also hope if he is bleeding they can find out where or why during the endoscopy. The central line is pretty scary and I hate having to have one placed but it is the last option for weight gain and nutrition.

 *Update*

Zach had surgery today, he went in around 2:30 and was done by 4:30. The original plan was the GI doctor was doing an endoscopy to check for bleeding and obstructions and then doing a manomety test (that is a test where they were going to thread a special catheter through his g tube down into his intestines, it would be hooked to a monitor for 24 hrs to measure stomach/intestine contractions, to tell how good or bad his system was working) and then the surgeon would put in a central line.


Well, when they did the endoscopy the Dr found that Zach's stomach, duodenum and small intestine was covered in ulcers, lesions and inflammation so he couldn't do the manometry because with all the damage it would have been too painful for Zach. The surgeon did place a broviac catheter in his chest right above his heart for tpn.

They took biopsies and they should be back tomorrow and we are also waiting on a blood test to come back to check for zollinger-ellison syndrome.

He started his TPN tonight around 8pm and so far doing very well. He is on it 24 hrs a day right now till they can get it stabilized. He has to have labs drawn every day this week to check his electolyte balances. So we will still be here all week.
*Update** Tuesday April 5

All of his biopsies and blood tests have come back clear except for major gastritis and deudenitis. He did really good on the tpn the first night and yesterday. Then yesterday afternoon the catheter broke so they had to repair it and we couldn't use it til this morning.

So they tried to start feeds back last night at 2 cc/hr but after 4 cc he started screaming and hitting his stomach so we stopped. He is just so painful, I think they are going to have to wait a while before doing that again. They finally started his tpn up again this morning. Hopefully this morning will go smoothly.

*Update** Friday April 8

They started him on pedialyte through his j tube yesterday to see if he has developed a sensitivity to elecare (his formula) and to rule out obstructions. He has done fine on the pedialyte but this morning we woke up to his farrell bag (the bag that is hooked up to his g tube to vent/drain his tummy) and it was filled with thick green bile...not good! So the GI is talking to his surgeon about what to do, they think it is an intermittent obstruction or some type of obstruction with his rouxe in y setup with his j tube. He is having another gastric emptying study today and then who knows...we have to wait til his surgeon comes by. Oh and he started having a allergic reaction to something yesterday night and they had to give him benadryl and then this morning it happened again and more benadryl so he is sleeping now.

*Update** Monday April 11

So it was a long weekend, they tried him on elecare a couple of times and it all ended up badly. He would wake up screaming and crying so we would have to stop. He was supposed to have a gastric emptying study on Friday but they couldn't do it so they opted for a ct scan instead but they didn't have anyone to sedate him so he didn't have that done either.

This morning the dr came by, a new doctor for the week and I can't say I really liked him but we will see. He did end up having the ct scan with contrast done today, it was supposed to be with sedation but with all of Zach's issues they had to have anesthesia put him completely under with a breathing tube. He did fine and an hour after the procedure he was up running around. Hopefully the results will be in tomorrow. They also started feeds back this afternoon about 6pm, he is only having them when he is awake and not laying down. He seemed to fine and actually got in about 15 mls of formula. I hope tonight is better than last night and no more pain.
Oh and today we also got a visit from a pediatric pychologist for her to see if his pain is just from anxiety and not really pain. All I can say is that really did not go over well with me, I told her when he wakes up from a dead sleep screaming in pain, trying to claw out his tummy and throwing up, it is not from anxiety...it is pain. So maybe she won't come back.