Wednesday, November 30, 2011

Where do I begin

It has been a long couple of weeks since I updated about Zach. Sad to say, we are in the hospital much has happened, I don't even know where to begin or what to write.

We did get 2 whole weeks at home! Then he woke up sick, vomiting, chills, fever so we were admitted for probable sepsis. It turned out he grew yeast again from his line...that was only 2 weeks old!! Words can't tell you how we felt about that. He can't afford to go through lines every 2 weeks, I couldn't believe he grew the exact same thing.

So the plan was, leave the infected line in and treat with mycafungin for a week and then remove and replace the same day. His surgeon was afraid of what happened last time with losing iv's, and blood sugar issues. Zach was feeling pretty good anyway so that was hope he was getting better.

So we spent our Thanksgiving in the hospital, my mom and I ordered lunch from Cracker Barrel and had a good time with our favorite nurse, Ryanne. Then the rest of the family came up for dinner together.

Zach also had an eeg on Thanksgiving to determine if his "reaction" to medicines being put in his J tube was any seizure is not.

Then friday morning, Zach had surgery. He woke up very nauseaus and vomited in the holding room before surgery and then after surgery he continued to vomit. He was vomiting every 15-30 minutes all day and night. It was by this point just blood, and he was draining blood..then on saturday, he continued to vomit and was dehydrated....wouldn't wake up and very painful. They had him on IV zofran, IV kytril, IV reglan, phenegren for vomiting and IV tylenol, IV nubain, IV dilaudid for pain.

They did an upper GI contrast study on Saturday that showed that his stomach/duodenum wasn't emptying the contrast so his GI dr decided to scope him first thing Sunday morning. During the scope he found that his esophagus and stomach are very inflammed from vomiting so much. But he also reached a point where he couldn't get the scope through so he placed some contrast in and it and the contrast just came back into his stomach. So the GI dr thinks he has an obstruction.

But his surgeon doens't think he has an obstruction, he has had a surgery before where his body was acting like an obstruction but nothing was there. So his surgeon is leary. We know his motility is not good so it could be that,,,we just know yet.

I do know that my poor son has been sicker this weekend than ever before. He has been vomiting since friday morning and in so much pain. He spent 3 days in PIMC because he was so sick. He has been on lots of meds and none of them really helping. Today was the first day he got out of was short, about a minute but it was something.

We are still waiting to find out what we are doing. He will have a test tomorrow where they will place a tp tube into his stomach and duodenum and inject contrast right at the spot they think is obstructed. If it is then surgery will be convinced and if not then the dr's are talking about doing a celiac plexus nerve block. It should help with pain and vomiting. I am supposed to talk to the pain dr today that would do it, he hasn't done one on a child Zach's age so it is scary.

After that, I am not sure what is going to happen. I guess we need to discuss transplant again....that is a scary road and I wasn't ready for it yet but looks like it will be sooner than later.

Saturday, November 12, 2011

We made it a whole week!!!

I am not jinxing anything, but I am so happy that we have been out of the hospital for a whole week!!! This hasn't happened it a while...well like about 2-3 months. A-m-a-zing!!

Zach has a lot of ups and downs this week....pain, vomiting, low grade fevers, autonomic crap but through it all we are still at home.
He has started vomiting and gagging whenever I put his meds in his J tube, then that sets off his autonomic crap...spiking fever, dizzy and lethargy
He has also been having more pain. His psuedo obstruction is really showing its ugly head right now. He was on lortab every 6 hours around the clock to help, but his dr's have changed up some meds this week.

His clonidine has been changed from a liquid form to the patch form that can be worn for 3 days, then changed. Hopefully he will get a more steady stream of medicine this way and it will help more with pain. Also they have started him on Lyrica to help with autonomic dysfunction and pain. So far can't see any difference but we will see. He is still on zofran every 6 hours around the clock. He is also still on his antibiotic (vancomycin) and his fungal (fluconazole) both IV for his blood infection, but they will both end on Monday.

Overall in between his pain and vomiting episodes he has been in a good mood. He gets worn out and tired very easily but we are pushing through. He is doing good in PT, he sees her once a week to work. We have lots of appts next week and hopefully learning some news that has been pending.
We have GI follow up, immunology and surgery follow up to get the biopsy results. The MRI has already been sent to Pittsburgh and so will the biopsy results. They will interpret everything along with the bloodwork and let us know.

And some bittersweet news as well, Zach was approved for Make a Wish. This is awesome in the fact that he will get to go somewhere that we would not be able to go without them but bittersweet that yes, he does a life altering diagnosis.

Friday, November 04, 2011

Central line drama, biopsy, MRI and discharge

On Sunday we found out that Zach's central line culture grew yeast....not good, that is the worst thing you want in your central line. It means you automatically lose your line, you can't clear yeast. So the doctors added in fungal meds in hopes to treat a few days with the line until his surgeon returned on Tuesday.
Sunday he ran low grade fevers all day but otherwise felt pretty good, he must have been pretty energized from the night before. Sunday night he ended up having hallucinations all night, he screamed and cryed and yelled that spiders and snakes and bugs were getting him...this lasted from midnight til 7am, then he slept some then continued throughout the day on Monday.
Monday of course was Halloween and Zach and Luke were both ninja turtles. Luke wanted to come see us instead of going to his halloween party at school him and Nana came up and all of them went to the party that the hospital had in the playroom. Right about lunchtime he started getting sick again, spiked a 104 fever, moaning, chills. So the doctors changed his meds around and put him back on Vanc, meropenum and changed his fungal med. Around 1 am Tuesday night, he started shaking really badly, spiked another fever and his stats kept dropping so we knew his line had to come out soon. His line had also starting clotting, you couldn't get any blood return on it.
So Tuesday his surgeon was back and the plan was to take Zach to the sedation room at 2pm and place him under sedation, place 2 iv's and remove his central line. They sedated him and the transport team got to work to try to find iv sites, unfortunately that is pretty hard in Zach. They had 5 transport (the team that rides on the helicopter) people and the PICU attending/anesthesia trying to place iv's and no one could get them in. Finally after about 30-45 minutes his surgeon got one. And then another was placed, both in his feet...poor boy :(
They had to run D10 in both iv's to keep his sugar levels up and still run the two antibiotics and fungal meds and fluid replacement. The next morning, the first iv had blown and transport had to come again and try to place another iv. Usually when you remove a line for infection, the plan is to wait 3-5 days for the infection to clear and then place a new line...but we didn't have the time to do that. His iv's wouldn't last and he had no access for more iv's and he can't go without due to sugar issues so they wanted to place a new one on Thursday.
Thursday morning when we got down to surgery, they took us down around 6:30 in the morning, we found that both iv's had blown. So the dr's were paged and everything was rushed trying to get him back into surgery before his sugar dropped to dangerous levels.
Dr P was placing a new central line, taking a muscle biopsy from his thigh and Dr H was doing an endoscopy to check why he has had so much blood from his g tube and then he was going for his MRI with spectroscopy. He finally got done and back to his room about 1pm. But the fun didn't end there, the first time we flushed his central line, his chest got really red and streaky looking and everyone freaked out. It looked like it had blown the vein. So the surgery residents and Dr P came up and determined that it was good, he just had a reaction to local anesthesia they had used. *note to self, allergic to lidocane*
Today went well, Zach is pretty sore in his leg from the biopsy. He is fine if he just sits still but if he trys to walk or put any weight on that leg he crys. So we have him on tylenol every 6 hours to help. I also had a consult with the pallative care nurse today at the hospital. She works with the enhanced care team which is over chronically ill children and complex medical cases. She is going to be over Zach's case now, which I am hoping will be a big relief for me. She will coordinate all of his doctors and keep them talking and help with getting all his info to the Pittsburgh neuro dr and so on. I am really hoping that is helps a lot.
We got to go home this afternoon, he is on vanc and the fungal med for another 10 days at home. We also have several follow up appts, GI is in 2 weeks and we go back to see Dr P in 2 weeks to get biopsy results. They are also sending the MRI study and biopsy results to the Pittsburgh dr for him to evaluate. We still have about 3-4 more weeks on the bloodwork to come back so we are still in a waiting game. For now we just pray for no more infections and pray for good days to enjoy.