Thursday, December 29, 2011

Didn't make it

We tried really hard to keep him home for Christmas, he was fighting and suffering since the tuesday before but was ok..but by Saturday it was clear that the pain meds were not enough. They had already increased the methadone that morning and told me try not to use the diluadid aaa much for fear of it making his episode worse.
We did dinner for the family that night, and presents for everyone except Santa gifts. Poor Zach wasn't even awake for more than ten minutes of it and didn't have the energy or interest in any gifts or family. By 9:00 that night (christmas eve) I was on the phone with his pediatrician, the pain was worse and he was really out of it. So we were sent to the hospital :(
Luckily we got one of our favorite nurses taking care of him and they started him on iv diluadid every hr as needed for pain. They did x rays and ultrasounds, but they revealed nothing. His gallbladder has developed some sludge but thatnis normal for being on TPN and no enteral feeds. His blood counts had dropped yesterday so he received a blood transfusion last night. They also were checking into his anemia conditions and for now have decided that it fits more with chronic disease anemia and he will just receive transfusions as needed for now. He could get iv iron infusions but they feel the benefits do not outweigh the risks right now.
As of today, he is really congested..he probably just picked up he cold that daddy had the week before christmas. He is also still puffy in his face and belly, still nauseous and has already thrown up a couple of times and still having breakthrough pain. The plan is for the dr's to call Pittsburgh and try and move him up there to finish evaluation and to help with pain/ vomiting control.

Friday, December 23, 2011


Sorry I haven't updated in a week or so..I cannot even express how crazy it has been around here. We got home on Friday night, with a still nauseaus Zach but he was fast asleep when I pulled up in our driveway. It was so good just to be sleep in our bed and to have both my boys together again.
Saturday and Sunday they were inseperable, they played and followed each other around everywhere. Monday was also not to bad for him but by monday night the pain was back and nausea was getting worse. He screamed and cried in pain all night and by tuesday morning I was waiting on his ped to call me back about what to do.
They decided to stop his feeds and hopefully they would end the pain. He started throwing up Wednesday morning and it has only gotten worse since. Yesterday his home health nurse pulled cultures and blood work, even though he isn't running a fever..infection is always still possible. I along with everyone else right now, believes it is another psuedo obstruction episode. He is still in tremendous pain, vomiting every 30 min to hour and his g tube and j tube are draining lots of air and bile.
We are trying everything to try to keep him home for Christmas, he is getting extra fluids and I have him hooked up to a GI suction machine to help with nauseau. He is also getting zofran every 8 hrs, phenegren every 4 hrs and dilaudid every 3 hrs or so on top of the methadone infusion. He isn't running high fevers, and blood work isn't pointing toward infection. So we are ok with trying to treat at home, really there isn't anything differently they would do at the hospital.
Please just keep praying he can make it through Christmas at home. Also keep my family in your prayers this holiday..we have been through a rough week. My husbands grandfather passed away on Friday, my father passed away on Monday and my husbands aunt passed away on Tuesday (the morning of his grandfathers funeral) And then with Zach being sick on top of all of this, it is just going to be a hard Christmas for all of us.

Friday, December 16, 2011

Going home and other plans

So we are finally going home tonight, probably around 8:30 or 9 pm after his last rounds of antibiotics and antifungal meds. He is going home on lots more meds and more pumps so it will take some getting used to.
He now has
*IV reglan every 6 hrs
*IV zofran every 8 hrs
*IV protonix 1 x day
*TPN 20 hrs a day
*Fluid replacement 24 hrs a day
*IV infusion methadone 24 hrs a day
*IV ethanol locks for 4 hrs in each lumen once a week
Elecare/pedialyte mix running enterally 1 cc/hr 24 hrs a day
Phenegren suppository every 4 hrs prn
Diluadid suppository every 1 hr prn

I think that is enough meds and stuff to keep up with for now.

His dr's met earlier this week and had big discussion about him and his plan of care. The biggest changes right now are they started him on the mix of elecare and pedialyte at 1 cc/hr 24 hrs a day to try and buy us time in preventing infections and not losing access. Everyone tells me that it is not feeds, no one is trying to feed him is just to buy time. I am trying to think of it like that, because feeding scares me...we have been down that road several times and it never ends well.
They also discussed sending him to a rheumotologist at Duke and still going to Pittsburgh to see what they think. I already heard from insurance about Pittsburgh, they are approved so just waiting on our dates to go up there. Hopefully they will let us know soon.

Wednesday, December 14, 2011

no much going on

Really not much to update...we are just hanging out until he finishes antibioitcs and we get his pain meds approved for home use.
He is doing really good, no extra pain meds have been used in a couple of days..which is awesome! It is so good to actually see my happy boy back, and to be getting sleep at night. He has been in pain for 2 1/2 years now and has been waking up and screaming every night and it is so great for him and us to finally get sleep. He looks so much better now. The IV pain pump is wonderful! Hoping we can go home on it...that is the plan as long as home health allows. We might have to switch over to Kids Path, which is a kids hospice company to get approved for the pain meds but we will see. I would really hate to lose our nurse we have now, she only comes once a week to do labs and check up but she is family now. We have had her for a year and a half.
Still waiting to hear dates for Pittsburgh as well, insurance takes forever! But hopefully by the end of the week we will know something.
Yesterday, his neurologist suggested that he had a mixed connective tissue disorder. We need to see a Rhuem Dr to get diagnosed. But all of his dr's are meeting this afternoon to discuss him and try to come up with some ideas. I am praying they can have some "light bulbs" going off and come up with some good plans. I should hopefully hear tomorrow what they discussed.

Friday, December 09, 2011

Whats new

Its been a long couple of days..waiting for answers.
Dr H came by a couple of days ago and said that they heard from Pittsburgh and that the dr's up there needed to discuss Zach and decide whether or not they still wanted to transplant him. All of his mito tests so far have came back negative, but with his biopsy showing some sort of myopathy they were worried.

This afternoon, Dr H emailed me with a wonderful email from the transplant surgeon in Pittsburgh saying that they are bringing Zach up there, they are just waiting on insurance approval!!
Zach is so lucky to have such wonderful dr's that care about him so much. Dr Y is so sweet and told me yesterday that even if Pittsburgh didn't want him, he still does...aww, love him!! His entire office and him care so much for my boy. And here, he has the best GI docs..Dr H is great and even the ones we don't see often, want to make sure he is comfortable. His surgeon is awesome, Dr P is so caring...he is really worried about Zach and wants him transplanted asap.

And on the pain note...we are working on that. The pain team came by yesterday and put Zach on methadone. They started with a bolus of methadone then put him on an infusion to try to find the right dose. They also increased his dilaudid frequency to every hour as needed.
Today, they discussed what would be best to go home on. He is thinking about sending him home on a PCA pump with a daily infusion of dilaudid and a button with the ability to give extra dilaudid boluses as needed for breakthrough pain.
They think he definitely needs to be on an infusion of meds to get the greatest results and then the extra meds for extra pain.

We will remain inpatient for the weekend at least. Dr L, his neurologist will be coming by on Monday to see him again. He is trembling at times, and she can give us her opinion on his biopsy and other symptoms. And hopefully by then, the pain team will have figured out the best home meds.
And then on Wednesday all of his dr's are getting together to discuss Zach and hopefully come up with some good ideas.

We are having some good days now...he played really well today. Him and his favorite nurse, Ryanne laughed and played today. They squirted each other with water syringes and got each other in trouble. He is so lucky to have a nurse that loves him so much and goes far above her "nurse" duty to care for him. 
"Lator Gator" Ryanne!

Wednesday, December 07, 2011

nothing to update

Nothing really to report today...GI came by this morning and they brought up the idea of the obstruction being due to his mickey button in his J tube. We have been down this road before, so I do not believe this is the problem AT ALL! They did an xray today to see if the contrast from yesterdays endoscopy made it past the button and yes it did, so wonder what tomorrow's big idea will be.
He is doing good today, cultures are still negative.

Tuesday, December 06, 2011


Zach had an endoscopy today around lunchtime to rule out the possible obstruction. They also did some contrast while he was under and got some flouroscopy pictures. Of course they didn't find an would have been so much easier and so much better if he would have just had an obstruction.
I didn't see GI after the endoscopy so not sure where we go now. Hopefully Dr Hill will be by tomorrow morning to enlighten me.

His autonomic garbage keeps acting up more and more....he is very clammy and sweating like crazy, causing his central line dressing to not want to stick and any tape I put on it isn't helping. He is actually kinda melting the monitor leads that on his chest, we have to keep replacing them everyday.

Still no talk about when we get out of here. He is still on 2 weeks of antibiotics and fungal treatment but that doens't stop us from going on....his GI uncertainity is what henders us.

Monday, December 05, 2011

gut bugs

So things were looking good infection wise, we were still trying to figure out the obstruction issues and then....he spiked a 103.7 fever. After an interesting experience with some residents who didn't know enough to satisfy me, he finally had some cultures and blood work drawn. And less than 12 hours later he grows 2 different gram neg bacterias.

The next day, he was no longer running any fevers but his heart rate was very tachy and he became very swollen, so we were transferred down to IMC again :( This time it was uneventful except for the test with the tp tube that was supposed to reveal if he had an obstruction. Thats a long story but to sum it was unsuccessful.

The two gram neg bugs were identified as a type of E coli called Citrobactor and then a psuedomona. Both gut bugs. So now he is on antibiotics again, this time a different one because the bugs he grew this time are smarter and more advanced than past ones...they are becoming antibiotic resisitant. Not good news at all!
But he is doing better, no fevers and playing again. We finally got negative cultures starting on saturday so now 14 days of antibiotics and also extending the micafungin treatment the full length of the antibiotic treatment.

On another note....both his surgeon and the Id docs think he needs to go to transplant ASAP but that also brings the problem of you can't get listed or stay listed with infections. His GI doc came by late this afternoon to give us an update on what they are doing. They have spoken to Pittsburgh and also believe he needs to go there but now Pittsburgh is hesistant about transplanting him due to not knowing the underlying condition.
So bascially we just sit and wait for Pittsburgh to make a decision. His GI doc would like to just transfer Zach up there from here so that they can help him.

So I am left wondering what happens now, what if they don't accept him, where do we go from here? I am hoping we get some answers soon. It looks like we will either be here or there for Christmas probably...there is no talk of us going home right now.

This is the condensed version..we are processing a lot right now, and my thoughts are kinda random. I will try to update again when we know more.