Surgery Update

Alex had surgery this morning to replace his port and pull his PICC line. The surgery went extremely well. A side note here to explain why we love this hospital and these doctors so much. Alex's favorite anesthesiologist is on pain service this week.  When he rounded on Tuesday we told him Alex had surgery today to replace his port. He knows he is our favorite and understands Alex's anxiety. He put himself on the schedule this morning to do Alex's case to help him feel better about it. Then left the OR to continue to round on pain service.

The great news is we are getting really close to discharge. It could be anytime over the next few days, While we are not back to baseline we are at a point where he is stable enough that I can care for him at home. We will continue to try and get him back to baseline as he improves from the two surgeries and pancreatitis. The only issue we have dealt with today is an extremely high heart rate. His Heart rate has stayed between 120 and 170 all day. We are not sure if it is from anesthesia or pain. We are hoping it looks better tomorrow because we definitely won't be sent home with a HR like that.

Thank you for your continued thoughts and prayers.
Ali

Making Progress

The last couple days have been pretty slow. We have tried to give Alex a break and not make too many changes. His GI motility appears to be returning to his "normal". Although we have not attempted to feed because he is still having pain and nausea from the pancreatitis.

The plan is to go to surgery on Thursday Morning to replace his port. Assuming he does okay and we have no further set backs, I am hoping we can be discharged on Friday or Saturday.

We had a nice Christmas. Maddy and Alex enjoyed opening their gifts. We spent time with Mimi and PopPop and just had a laid back day.

Thank you for your continued prayers and support.

Ali

PS- Please keep Maddy in your thoughts and prayers. It is really hard for her to not have Mommy home. This has been a hard three weeks for her with lots of change and uncertainty.

To the PICU and Back

What a crazy 48 hours this has been! Shortly after I updated on Friday our nurse came in and sat down and said, "I have bad news". I had no idea what to expect. She let me know that the decision had been made to move Alex down to the ICU because of the level of nursing care he needed/number of IV medications he is on. I talked to the charge nurse, the nurse manager on the floor and begged and pleaded in every way I could to keep him on the floor. The nurses, charge nurses, care partners and secretaries up here have become like family. I will just say that I didn't cry alone.  When we got down to PICU the charge nurse and nurse manager down there came and spoke to me as well. They assured me that the ICU was the correct placement at that time. For those of you that are wondering, he was on a Fentanyl PCA pump, a Ketamine drip, an octreotide drip, merepenum, micafungin, gentamycin, as well as 6 other IV meds. He also has all of his meds through his tube. We were draining both G and J tube. Anyways, you get the picture. His care is A LOT right now. We spent Friday night in the ICU and our hope was to get upstairs sometime today.

GI made the first change yesterday and stopped the octreotide because his lipase continues to climb (almost 1800). We saw Infectious disease yesterday and they wrote to stop antibiotics as of 6 AM this morning because we have completed our 14 day course.  The biggest changes came with pain team. We were not getting adequate pain coverage with the drips any longer. we decided to stop both the Fentanyl PCA  and Ketamine and try something different. Because we were able to make those changes yesterday, we actually got up to our floor again last night. We are in a pretty small room, but the sweet charge nurse just came in to let me know that our old room is opening back up and they will move us back to "our" room once it is cleaned. Did I mention how awesome this unit is?

Where we are today...We are still fighting the pain, but he is doing okay. Overall, he feels kind of yucky. His motility is back to his baseline as far as we can tell, but it is hard to say because we cannot attempt feeds with the pancreatitis.

We are happy to see Mimi and PopPop who are flying in in a few hours. We are happy to be back in a regular room. We are so grateful for our friends and family who have supported us in so many ways during this hard time.

We want to wish everyone a Merry Christmas. Our prayer is that you find joy this season know where you are or what circumstances you are facing.

Ali

Baby Steps

We are still making baby steps forward. Alex's motility is slowing starting to come back. it is just a really slow process. We are able to clamp his J tube for several hours at a time now and we have some bowel sounds. Unfortunately we have had to lower the dose of the medication that has gotten things moving. His lipase was almost 1500 this morning and he is having increased pain and nausea. We will continue to try and clamp his J for longer periods of time. The next step will be to try and get his medications back to oral meds through his tube instead of all IV. We will definitely be here through Christmas, but our hope is that if things continue to move in the right direction we will be able to get home sometime next week. Alex is in much better spirits today.

Thanks to the fabulous Mrs. Mitchell (Maddy's teacher), I was able to make it home for a few hours this morning to do some things at home and take a moment to breathe. It was nice to do some "normal" things for a few minutes!

We are so very grateful for all of our friends and family. Thank you for your prayers and support. Please continue to pray for Alex's body to recover and his pain to lessen.

Ali

Finally Some Steps in The Right Direction

Overall today was a MUCH better day. It finally felt like way made some steps in the right direction. Alex had some faint bowel sounds today. His output from his G and J tubes was a fraction of what it had been and we had some other signs of gut motility. We still have a long way to go, but it was encouraging to see some progress no matter how small.

We are also continuing to decrease his pain meds each day. We have stopped his continuous drip of Fentanyl. He is still pushing the button to get fentanyl through his PCA pump, but we did lower the dose today. We also still have a ketamine drip going. We are hoping we can come of the Fentanyl PCA tomorrow.

Alex only has 2 days left of his IV antibiotics and he is doing great from the infection standpoint.

His blood sugars are stable today.

Really the only negative is his lipase continues to climb (Currently almost 1000, normal is less then 70) and we are walking a fine line between wanting to get motility going and trying not to send him into a serious bout of pancreatitis.

I have to brag on Cook Children's and the nurses. Our care has been exceptional. The last admission they made his nursing ration always 1:3. Because of the amount of care he is needing right now they have lowered his ratio to 1:2. This is amazing because this normally requires you to be in the ICU. They want us to have the comforts of a regular room without compromising his care. They have also kept our pool of nurses extremely small so the nurses are comfortable with his care and there is less chance of error. Today I was able to go downstairs and choose a few gifts for each kid that they will deliver to our room on Christmas Eve after Alex goes to sleep.

Thank you so much for all the thoughts and prayers.
Ali

Weary Wednesday

Today started off rough and got worse before we finally received some good new this afternoon.

Alex and I both slept pretty well. He woke up in a better mood and the day seemed off to a decent start. Pretty soon though they came in and let me know that Alex's Lipase (pancreatitis lab) was higher again this morning and his blood sugar was over 300.  We also were having no signs of gut motility. The pharmacist was the first one so we could brainstorm on the high blood sugar and what adjustments we could/should make to his TPN (IV nutrition) and fluids.

Around lunchtime Dr. Osuntokun decided we needed to do an imaging study to make sure he did not have an obstruction in his intestines. The study involved some contrast and Alex knew he was going to hurt and potentially make him feel sick. There were lots of tears and stressful moments in the time leading up to the procedure. Alex did a great job and luckily there is NO obstruction which is awesome because I would not want to have to send him back to the OR on Friday.

So at least we have answers and know there is no obstruction. Unfortunately that means we are just dealing with really bad motility and we just have to be patient. Dr.Osuntokun feels like it is important to keep the motility med going a few more days even though those are the most likely cause of the hyperglycemia and the increase in lipase levels.

We are checking blood sugars more frequently now and may have to start some insulin tomorrow.

We have had so many people help us in so many ways. We received a very generous donation in the mail. It was anonymous. So to whoever sent us that card. THANK YOU!!!!!

Please continue to pray for Alex's strength, both physically and emotionally.

Ali

Not a Good Day

I wish I was able to come on and post about how well things have gone today. Unfortunately, today has been a rough one. It started last night. Alex had a reaction to the bolus of the new medication to get his gut going. There was a lot of discussion about if it was an allergic reaction (a real possibility given Alex's history) or a known side effect of the drug. Immediately after getting the medication he turned bright red, starting itching, heart racing, light headed, and became extremely nauseous. Alex became really anxious because he knew we were supposed to continue on a slower drip of this medication. i was also nervous about this. I wanted to watch him as it started running and make sure he was okay so neither of us got great sleep. Alex woke up in a bit of a funk this morning. After everything he has been through he certainly deserves to have a day where he isn't happy! He is tired of constant people in our room. He is tired of everyone messing with him. He is tired of the doctors pushing on his already hurting stomach.  He has not felt well physically today either. He can't pinpoint what is wrong. He just "doesn't feel good". Our endocrinologist kept his hydrocortisone dose the same. His hospitalist didn't make any major changes. Pain went up on our secondary medication in hopes that he won't need to push the button on his PCA as often. GI is pretty much just waiting and watching, but we are keeping a close eye on his labs because his already high pancreas labs doubled overnight. (The med we are using is known to have a side effect of causing Pancreatitis, but it is one of our only options) The really tough visit was from surgery. First he wanted to check his surgical site and caused quite a bit of pain. Then he mentioned that if things don't start moving in his gut by the end of the week, he will have to take Alex back to the OR on Friday and open him back up to make sure their aren't more adhesions or any other issues that could be adding to our problem. This is obviously the last thing we want to put him through.

Please pray for us. Pray for my sweet boy...for his pain, for his heart, for his gut to start working, for him not to develop full blown pancreatitis.

Ali

Baby Steps

We have finally seen all of our doctors today. Last night Alex slept much better and I got a good night sleep!!! In some ways things are pretty much the same and in some ways we made a few baby steps forward today.
 Alex's GI system is still dumping a huge amount of bile, but it is less then yesterday. Dr. O has started another IV medication to try and get his gut working. His x-ray this morning was read as showing a possible obstruction, but we are hoping it is just his typical pseudo-obstruction. If things don't start to improve with this new medication we will have to do more testing to be sure there is not a true obstruction. If he is doing okay in the morning and his output is less then we will try clamping his J-tube for an hour at a time and see how he tolerates it.

Pain team tweaked his pain meds today. We went down slightly on a medication that can slow the gut and added a new medication to try and keep his pain at an acceptable level. We also tweaked his replacement fluids to try and keep his fluid balance at a good level. One of the biggest struggles we are having is the amount of IV medications and fluids we need to get in. Certain meds are not compatible with others and it is a huge puzzle trying to figure out how to get it all in.

Alex did get up and walk a short distance two times today which was great.

Surgery is happy with how things look. They are just waiting for his gut to wake up along with the rest of us. We are still watching the discharge to be sure it is not infected, but he seems okay from a surgery standpoint.

Infectious Disease is just kind of following along to finish out, but his infection is all but cleared. He will be done with his antibiotics on Christmas Eve.

I think that is it! Whew!!! Please continue to pray for Alex's comfort and for his gut to wake up.
Ali

The Things I See

I look around and could see hospital walls, but I see a room decorated by friends.
I look around and could see a sick little boy, but I see strength and bravery matched by few.
I look around and could see strangers, but I see Doctors and Nurses who love my son.
I look around and could see a hospital, but I see a place filled with hope and love.

The past month and really much of the past years have not gone how I envisioned my life going, but I see so much love and generosity, and goodness all around me. I see so much to be grateful for. I decided to livestream church this morning. When the band started to play the first song, I realized it was a song that means so much to me. It is a song that speaks to me. It makes me think of Alex and his story:

Life is short, I wanna live it well

One life, one story to tell

Life is short I wanna live it well

And you're the one I'm living for

Awaken all my soul

Every breath you take is a miracle

Life is short; I wanna live it well

I got one life and one love

I got one voice and maybe that's enough

Cause with one heartbeat and two hands to give I

I got one shot and one life to live

So it brought tears to my eyes as I heard a little voice singing from the bed this morning along with Sean and the praise band. My son is such a miracle and so able to see things in the right way. He always thinks of others. In the middle of the night as he was awake with horrific pain, he said "Mom, I'm sorry you may have to spend Christmas in the Hospital because of me." I assured him Christmas was about us being together and not where we are. It gave us both a good chuckle this morning when Pastor Chris started his sermon talking about Christmas not taking place in the place you expect.

The praise band finished the service with the song See the Love. I see the love. I see it in hospital staff, I see it in meals delivered, I see it in visits from friends, I see it in generous gifts, I see it in calls and texts and messages. I see it all around me and I am so grateful!

Ali

Oops- I almost forgot the medical update...Things are pretty much the same. Last night Alex was in a ton of pain. We through every med we could at him and he was still sitting at a pain level of 7. We finally drained his Jtube this morning and he drained over a liter of fluids in the first 3 hours. He is continuing to lose fluids at an alarming rate. We are replacing the fluids for now. His GI system is just completely shut down. We have changed all possible meds to IV to alleviate as much going in as possible. We are also watching a spot near his incision that appears to be draining pus. There is concern that could be a small abscess. We are checking labs this afternoon and an xray in the morning to help us assess where we are and come up with our next plan.

Saturday Update on Alex

I have been waiting all day to update because I wanted to be sure we saw everyone and had a plan before I updated.  Alex has had a better day from a pain standpoint. He is still on some hefty pain meds quite frequently, but at least he is more comfortable.

From an infection standpoint, he is on 3 strong antibiotics and has not had fevers so things are status quo there. As far as endocrine we have tried lowering his dose of steroids and he doesn't feel fabulous, but not horrible so we are going to try and stick with it.

Things look okay from surgery. He has one small area with some possible pus so we are watching that closely.

Our biggest issue is from GI. Hi GI motility has completely stopped. Dr. O came in and we have switched some meds to IV and added two new meds to try and get things moving. Right now everything is backing up and dumping out his Gtube. We can not attempt any feeds until we get things moving in the right direction. The meds we started are supposed to help the stomach. Once he stops dumping so much we will start a different medication to help his intestines. Unfortunately, Dr. Osuntokun was not optimistic about us making it home for Christmas.

Please pray for Alex's gut to wake up and for his pain level to decrease so we can make it home!
Ali

Rough Night

Alex had a rough time last night. His pain started to increase overnight and his gastric output is extremely dark and quite a bit. We are running some labs to rule out pancreatitis and we have increased his pain meds to try and get him more comfortable. The goal today is to try and get him out of bed. please say some prayers for some pain relief and overall improvement so we can work towards getting home.

Ali

Surgery Update

Last year when Bruce took the job in San Antonio and we thought about moving, we ultimately decided we could not move because of our support system here. Never have I felt that love and support more then this past week. Thank you to our "village". The love, the prayers, the meals, the help with Maddy, decorating our room, so many texts and emails. It is felt...All of it and it means so much.

When we started putting together the puzzle pieces on Tuesday we weren't even sure that we could get everyone on the same page. Tuesday evening surgery came by and said we were a go, but that it would be Thursday or Friday. Later that evening they came in to let us know that surgery would be Wednesday at 2:00. Yesterday morning they came in at 8:45 to tell us that they would come for us at 10! From there it was a scramble to make sure everything was ready and to meet with Alex's surgeon. Alex was really scared, but did a great job. He was wheeled into the OR around 11 and we got back to our room around 4:30.  Surgery went well, but it was a very long day.

He is having some pain, but is on a pain pump and is doing well. We will most likely be in the hospital until mid next week. I will try and update again soon.

Hospital Update on Alex

I am trying to get out a quick update on what has happened and where we are at this point.

Saturday night Alex woke up around 10:00 and said he wasn't feeling well. We checked a temp and it was normal. He took some medication for nausea and went back to sleep. He woke me up at midnight still not feeling well. He still did not have a fever so I gave him medicine for stomach pain and sent him back to bed again. He woke me up just before 1:00 saying he felt worse and his temperature was 103.4. We quickly headed in to the ER.

On Sunday right before lunch his blood cultures came back growing the same bacteria that he has grown every other time. A quick explanation for all the people who have asked...Alex's intestines especially his colon are extremely damaged from years of not working correctly. The continuous horrific distention from gas has caused the lining of his intestines to stretch to the point that it is leaking into his bloodstream. At this point the only solution is the major GI Surgery that we were planning to do in January or February.

Alex ran fevers until Monday morning, but has been fever free since then. He is being treated with the only two antibiotics that this bacteria is sensitive to. There has been much discussion about trying to leave his port in place and treat with the antibiotics or pull his port finish his course of antibiotics to be sure we have cleared the infection and then replace his port. Infectious Disease feels strongly that removing his port is the safest course long term. The fear of leaving this port and trying to treat is that if we don't clear it we are allowing the bacteria to become resistant to the only two medications that we can use.

Here is the catch...putting in a new port makes no sense until the GI surgery is done because we will just infect the new port as well. So we are trying to get all the specialties here to talk and do one surgery later this week to include the GI surgery and remove his port. Then we would finish the antibiotics and replace his port after the holidays.

Alex is doing pretty well emotionally today. He is feeling as ready as he can to do the major surgery. He is scared,  but doing a great job talking about his feelings.

Please continue to pray for Alex, physically and emotionally, pray for the doctors to coordinate and make this plan work, pray for Maddy as our hospitalizations are hard on her, pray for me as I am so tired.

A Really Rough Week!

We have had an incredibly rough week. Last Monday, Bruce was informed that his company had drastically over forecast their sales predictions for 2017. Consequently they reduced the workforce by one third. Bruce was a casualty of those layoffs. It was completely unexpected. It has left us scrambling. There is never a good time to face a lay off, but December is brutal and having no warning adds insult to injury. Bruce is searching and we are hopeful that he will find employment quickly.
Last Wednesday, Maddy had an endoscopy and colonoscopy to investigate her stomach pain and vomiting. Despite doing a 24 hour clean out and receiving an enema she never had a bowel movement. Dr. O is confident that her slow motility and constipation is causing her pain and making her reflux worse. We are working hard to get her constipation under control so she can feel better.

Alex's acting class had their spring recital Friday and Saturday. Alex was amazing. It is so fun to watch him perform with so much confidence and really enjoy himself. By Saturday he was not feeling great, but he still gave a good performance. By Saturday night he was really starting to decline. His stomach was hugely distended and he was in quite a bit of pain. It continued to get worse all through Sunday to the point we were considering going to the ER. We knew there wasn't really anything they could do so we stuck it out at home. Luckily, Dr. O had a cancellation on his Wednesday procedure schedule and he was able to get Alex in to decompress his intestines and buy us more time before his surgery. Alex is feeling much better today!

Please continue to pray for our family. Pray for Bruce to find employment. Pray for Alex to feel better physically and to come to terms emotionally with his upcoming surgery. Pray for Maddy to continue to stay healthy and thriving. Pray for me to be there for everyone in the way that they need me.
Ali

We are so blessed by this incredible nurse. She is so much more then just a nurse. She truly is family and we all love her!

Alex going to his youth group progressive dinner.

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