We woke up this morning thinking we would be discharged and on our way to the Knight's house for some fun! Unfortunate​ly my little trouble maker had other plans! He woke up shaking and really puny. His temp was 100.6 and he just wasn't acting right. I thought it was probably just anesthesia, but headed out to talk to the doctors and nurses. They were very concerned with how Alex looked and was acting. A quick glance at his labs explained the problem....​He needed a transfusion. So our discharge plans were scrapped. Alex got blood and the shaking stopped. He has continued to run low grade fevers most of the day. The team was thinking about letting us go tonight after the blood was done, but Dr. K thought it would be best to stay and let them keep a close eye on Buggy. We are planning on discharge in the morning.
Thank you for all your love and prayers.
Ali​

PS- Please keep Cooper in your prayers. He did well during surgery, but is struggling tonight.

Lots to update....

F​irst a prayer request for a good friend. Cooper Knight has been on the transplant list for a small bowel and colon for a year. His call came last night to head to Pittsburgh for his new organs. Missy and I were so glad we were here to help Sarah emotionally and logisticall​y. We love you guys and are praying for Cooper today during his surgery and for a smooth recovery. We love you guys.

As for Alex....Sun​day was a pretty quiet day with nothing new to report. We stopped antibiotics and Alex was feeling pretty good except for still complaining of belly pain. Sunday night he woke up crying and whimpering because of pain.

Yester​day I woke up to a child that was not my sweet Alex. He was combative, belligerent​, and just downright mean. We were all pretty sure that his ammonia must be high as he was acting like he always has with high ammonia, but when we checked it it came back ok. So we really aren't sure what to make of it. Other then that things were pretty quiet until Cooper's call came and we started the mad dash to get them packed!

Toda​y was Buggy's dental cleaning and SSEP that we have been waiting for. He did really well. I was shocked when the dentist came out and told me he has 4 more loose teeth! Then the infamous SSEP that has been cancelled 4 times was finally completed! I don't have results yet, but hopefully soon. Alex seemed to do pretty well with anesthesia. He did not have a seizure this time. We are so thankful the new meds are working. His temp is up some, but that is pretty normal for Alex following anesthesia. We have Bug on oxygen which he always hates and we will check labs and watch him tonight. Assuming he stays stable we should be discharged tomorrow.

So​rry I have been slow with updates.
Ali

Things coninue to go pretty well here. Alex is feeling pretty good...some stomach pain and some headaches, but not too bad! Alex's labs this morning look much better infection wise. His blood counts are on the verge of ransfusion level and his IgG (immune function) is very low. We are working on clamping Alex's J tube for periods as he tolerates it. In hopes that we can get his GI system working again and get off TPN and back on feeds. That would make Buggy and Mommy very happy.

The plan is to be discharged Monday morning in time to make it to an appointment with the anesthesiol​ogist. We will spend Monday night at the Knight's house and head in Tuesday morning for his dental procedure and SSEP. We will be readmitted after the procedure for at least 24 hours, but possibly longer depending on if we think we can work on resuming feeds. The following week we have a number of outpatient clinic appointment​s. We are hoping to head home on May 7th.

We are fortunate to have a team with a resident who knows us well and is awesome to work with. We have also had great nurses as we usually do on the 9th floor. And we have two other families here who are close friends which always helps Mommy's mental sanity!!!!!​

So all in all this has been pretty easy as far as admissions go. Thank you for checking in on us.
Ali

We are in Houston. Alex is feeling pretty good. We arrived around 7 this morning and were settled in a room at 10. He played for a while and then has been asleep most of the afternoon! His labs clearly indicate an infection so it is a good thing we came in.

I will keep you updated as we know more.
Ali

Prayers needed....A​GAIN!

Bug has 101.5 temp. We are in the process of packing and deciding if we need to get on the road for Houston. If it gets any higher, we are out of here.

Ali

In Alex's words....HO​LY WAUCAMOLE!!!!!​

Buggy boo lost two teeth today!!!!! His two bottom teeth fell out. I guess I can't call him a baby anymore!

Ali​

PS- There was a long update before. So read it if you missed it!

Sorry I never updated again! I am trying to get our life back into order!

Thurs​day we were up super early and glad to see our team was already hard at work on our discharge paperwork. I had the car loaded at 7 AM. Unfortunate​ly, we had to wait for a pump from our home health company and he had to have several medications before we could get on the road. We were very fortunate that Christine (our beloved music therapist) came and spent some time entertainin​g Alex (or maybe it was the other way around!). We also got to spend some more time with our new friends Sarah and Cooper.
An aside here...Thos​e of you that know me, know that I am about as outgoing as possible. I love people and to be surrounded be people. At the hospital as much as I love the nurses and formed some good friendships with many of them, they have to work and thus cannot entertain me! I have been very fortunate to meet friends along this journey. This time we got to know Sarah and Cooper whowe had met once before. Cooper was just diagnosed with mito and was admitted a day after us. I was so thankful to have Sarah around to have meals with and chat when things were slow. We miss you guys!

Ok, back to Thursday...​ Cooper and Alex played in the playroom and Sarah and I chatted while we waited for our meds to be done. We got on the road around noon. The ride home was rough as I expected. Alex pain is better when he is lying down. So sitting in a car seat is not comfortable. Add to that the 3 accidents that slowed us down and it was a hard trip. We were so happy to be home. Our supplies arrived shortly after we got home. Unfortunate​ly when Alex is on TPN (IV nutrition) it is A LOT more work! Add to that his medications are all IV and some of them have to be run over an hour. So I was not done getting Alex settle until 11 pm. At which point I crashed! I didn't even unpack my suitcase which is unheard of for me!

Yesterda​y, was more of the same with laundry, mail, medications​, unpacking, etc. You get the point. I am starting to get somewhat settled.

Alex is doing okay. He has periods of pain. He doesn't like having to carry his TPN as it is REALLY heavy and hard for him to carry, but he is hanging in there. We are getting back into our routine today with school. We have a week until we are back down to Houston so we are going to get through as much as we can.

I cannot thank you enough for all the phone calls, emails, and guestbook entries. They keep me going on hard days.
Ali

WE ARE HOME!!!!!!

M​ore later (I promise)....

Y'all must of been doing some serious praying this morning!!!!!​

We are coming home tomorrow! We are so excited. I am a little worried about Bug though! He is super quiet this afternoon. I know he is in a lot of pain. He knows that if he asks for pain meds then we can't go home so he is toughing it out. What a tough cookie he is!

Thank you for all the love, support and prayers over the last week.

Ali

Things are trekking along! Not much to report. We are kind of holding steady right now.

I am feeling MUCH better. I was excited to have a fun visit with Missy last night and I even ate a cheeseburge​r! Emotionally​, I am treading a thin line. Alex is cranky. The stress of no income for the last year has steadily been wearing me down and now we are back inpatient on TPN and lipids with no idea when we are coming home or how long before Alex makes huge strides and we can reattempt feeds. It just stinks sometimes!S​o that is my pity party for the day!

One of the complicatin​g factors in our decisions right now is our upcoming schedule. We were scheduled to come to Houston April 25th. He is going under anesthesia on the 27th (for dental work and the SSEP that keeps getting transferred​) and will be readmitted as always after anesthesia. Then we have appointment​s scheduled the entire following week and are not supposed to return home until May 7th. Some of the doctors are feeling that maybe we shouldn't push Alex and go home just to be readmitted in a week. So we are going to monitor the next few days. If he is able to go home before Monday, we will go and have a week at home. Anything after that I am not sure. I don't know that it is fair to make a child with severe abdominal pain sit in a car seat for 5 hours twice in less then a week.

Please pray for Bug to feel better, for my peace of mind, and for Bruce to find a job and relieve some of the incredible stress we are under.
Ali

Poor Buggy! He is not feeling well. Unfortunate​ly his pain has been worse the last 2 days. We have some pretty strong pain meds on board, but that will keep us from getting home!

He is hysterical with them though. Alex can sometimes "taste" his IV meds. Yesteray after a hefty dose of fentanyl (which is about 100 times stronger then morphine) I asked him if he had tasted it. His answer....N​o, but its make me really dizzy and that has me entertained! Then today after another dose, he told the doctor he felt GREAT! I bet he did.

Otherwi​se things are about the same. We have TPN and lipids running. We are watching labs and adjusting things as needed. His blood counts are teetering dangerously close to transfusion level.

Someh​ow through it all he keeps a smile on his face and the rest of us amused with his antics.

Plea​se pray the pain improves and we can make it home soon. And for Brucey to get a job!

Ali

Well there is good news and bad news today!

The good news is that I am feeling a little better. I am still not eating, but I haven't thrown up today.

The bad news is that Buggy has pancreatiti​s again. We hadn't checked his numbers since we came in even though I kept asking. They checked them this morning and his lipase is pretty high (1500). We are working on starting TPN and then will hopefully come home for a few days before we have to be back here on the 25th.

Buggy is doing pretty well. I am just trying to keep him occupied. We are both hoping to be home in the next few days.
Ali

If you have some spare prayers, please pray....for ME!

I have the stomach bug that Alex had. I have thrown up numerous times and fell really cruddy!

The nurses have been really good and are helping keep Bug happy.

Hopefully, I will feel better tomorrow.
Al​i

Sorry I didn't update again yesterday. I have been so tired. I am falling asleep pretty early each night. The good news is that I am sleeping really well.

As for Alex....It seems as if things are improving. He had a fever all day yesterday, but it is down this morning. We are still draining his jtube and that has seemed to give him pretty decent relief. He is only complaining of his belly now when we clamp the tube to give his medicines.

We are hoping that he continues to improve andwe can attempt to restart feeds tomorrow.

Al​i

Why can't it be easy?????

So while I came in believing wholehearte​dly that we were only going to be here a few days, My Bug is NOT cooperating!!!!​

He had increasing stomach pain last night and started leaking out bile all around his Jtube. After some discussion with the on call docs we decided we should also drain his jtube like we do with the gtube. We are checking electrolyte​s and replacing as needed. The problem is that we had hoped to attempt to restart feeds today or tomorrow. That is a lot less likely if we have to drain the Jtube.

On top of that Alex respiked a fever overnight which leads to more labs and cultures to be sure he is doing okay. And at least 48 more hours here.

The good news is that Alex is a little more himself this morning and the dizzy spells have subsided since we started the new medication.​

After 2 nights of pretty good sleep (as good as you can in a hospital) I am doing okay.

Thanks for keeping us in your prayers.
Ali

Today has been a little better! (It had to be didn't it?)

Alex and I both slept very well. I actually fell asleep before 9:00. Alex has not vomited at all today. His stomach is still hurting, but we have had short periods where he will sit up for a few minutes. The thought is that he got an infection and it slowed his GI motility even more then usual. Our hope is that if we give him a few days we will be able to start feeds and go back to "normal".

His temperature has stayed down today. It is hanging right around 100. Enough to let us know he isn't completely well, but not enough to make him feel horrible.

Th​e main concern today has been numerous dizzy spells. Dr. Koenig had just gotten to our room when he started one. She came in and his pupils were dilating and constrictin​g leading her to believe it was more seizures. So we started a seizure medication this afternoon. Hopefully, that will control things. I am not sure whether we will continue this new medication when we go home.

Please pray for Buggy to continue to feel better.
Ali

Oh what a night.....

W​e headed to our local children's hospital to the ER last night. In the past they have transferred us to Houston and been very easy to work with. That was not the case last night. They ran labs and despite signs of infection, dehydration and elevated pancreas enzymes they discharged Alex this morning with a temperature of 104.8. Standard protocol for a child with a port or central line is to admit for any temp over 101 and do 48 hours of antibiotics while you wait for cultures to come back. So the fact they would discharge us with that temp is crazy and neglectful! I immediately contacted Dr. Koenig and she told me I needed to get on the road and head to Houston. So with no sleep I dropped Bruce off and Alex and I continued on. We arrived in Houston at 10 AM with a temp still over 104. It has been an extremely tough day on Alex. He feels horrible. He has vomited close to 10 times since last night. He is in pain and nauseous. He had a very scary seizure in the ER where he couldn't communicate with me for 15-20 minutes. We have just made the decision that it is time to stop his feeds and give him a break. So we are starting IV fluids. I will discuss the seizure with Dr. Koenig tomorrow and get her thoughts.

The bright spot in the day was meeting a friend I have had on the internet for the past few years. She is as fun as she seemed and her littel guy is precious. I just wish we would have had more time together.

I will update tomorrow. Thank you for all the well wishes and prayers.

Ali

Please pray....On way to ER. Bug has 104.2 temp despite tylenol. I will update as I know something.

A​li

Yesterday was such an awesome day. Alex exuded joy all day. I had to share a few stories.

The day started with an easter egg hunt and treasure hunt to find his Easter basket. Alex always loves the treasure hunt. I was really proud this year as he read all his own clues. He loved figuring it out and racing to the next spot. Once again the Easter Bunny overdid it! Alex was THRILLED with his basket. He got a few toys that he has been wanting for quite some time.

My aunt, uncle and cousin came for lunch. Alex loves them and spent his time bouncing from one to the next. I am pretty sure Andrea got the most attention. he always does love a pretty young girl!

Some of you who have been following our story for a while will remember that he used to be able to eat 4 foods (Those were the only ones he could tolerate out of everything we tried). He could eat pinto beans, blueberries​, carrots and bananas. Pinto Beans were always his favorite! He has not been able to eat for the past two years as his stomach does not empty anymore. The food just sits there and makes him sick. On a few occasions we have let him have tiny tastes of very liquidy forms of his previously safe foods. So I had promised him that on Easter I would make him bean dip. (Basically mashed pinto beans, water and salt) I could barely get Easter dinner on the table as Alex kept coming back into the kitchen begging for his bean dip. I finally got us all settled. The smile on Buggy's face was priceless. Even better was the exclamation​s..."this is a pleasure to my appetite" over and over. It was just precious. Unfortunate​ly he is paying the price as his tummy is bloated and hurts. But he would tell you it was worth every bite!

Once again my next story takes some set up for those who don't know us personally. Alex loves food. He loves to smell it adn experience it in his own way. We have always encouraged him to take part in meals and have never pitied him. He is also extremely nonchalant about his tubes. He will show them to people without a thought. SO...After the company left we all had some quiet time. Alex had just gotten up when he heard the ice cream truck music. Alex has never experienced the ice cream truck for obvious reasons, but we had talked about it a few days ago when I heard the music and told him about running out of the house as a little girl when I heard the ice cream truck. So he gets all excited and takes off out the door in nothing but his underwear! Two tubes, port accessed, backpack on, and pure joy on that sweet face. Luckily our neighbors are great people and familiar with Alex's health problems and acted like nothing was wrong. As we waited for the ice cream truck to pull over, Alex was bouncing around in his excitement. The truck driver sure got an eyeful! Alex quickly picked which ice cream he wanted and ordered. He had the ice cream man chuckling. He was so excited to order a choclate ice cream sandwich which he pronounced was double fudge. He was so very proud of his purchase. And we got the ice cream mans card so we can call him when we want him to come around!
He announced yesterday the best day ever and then crashed into bed.
I love days like this!
Ali

Happy Easter!

On this Holy Day, I am reminded of how much we have to be thankful for this year. Alex is doing so well compared to last year. Our friends and family have so been so supportive and loving. Most importantly​, a sweet boy who teaches us all how to live and enjoy life.

I hope you all have a blessed day!
Ali