So Happy to be Home!

Sorry for the lack of updates. We were discharged around 10:30 on Tuesday. I am so appreciative of the nurses and doctors who all worked hard to get us out of the hospital as soon as possible. Unfortunately the ride home was really rough on Alex. He was extremely nauseaous. I had to pull over several times. Luckily I had a dose of zofran in my emergency kit. He also had pretty significant back pain. With pancreatitis the pain can radiate to your back. It has bothered him some, but being stuck in one position in a car seat really took its toll. Needless to say we were both happy to pull in the driveway. I spent some time unpacking and Alex enjoyed some quiet playtime with Daddy! We had a scare Tuesday night when our delivery was not here as early as it should have been. Alex cannot keep his sugars up at all when his TPN is turned off. Luckily, his delivery got here 30 min before we were going to run out. Running all IV meds is a lot more work and time consuming for me. So it made for a long night Tuesday night.

Yesterday was a quiet day. Alex spent most of the day in his bean bag watching movies. I tried to get life back in order! Alex is doing okay. His belly hurts some,  but not terribly. He is so tough. I have spoken to numerous adults who have had pancreatitis and they all say it is the most horrific pain you can imagine. It makes me sad that my little Bug has to experience that. I am so proud of how well he handles the trials he is faced with.

We ran labs again this morning. If his numbers are still trending in the right direction, we are hoping to try one med into his tube over the weekend. We will see how he feels and what labs look like on Monday and then reevaluate if we can progress or he still needs more time. This is always such a long process. It is frustrating as I want to rush and get him back to "normal". I have learned through the years slower is always better with Alex.

Here is a picture of him today relaxing on the couch:

Thanks for all the prayers.
Ali

Visions of Home

The plan is home in the morning! We cannot wait. Alex took a LONG time to wake up on Saturday. He was so funny and drugged. His stomach was considerably more distended again so we wound up doing an xray and draining his Jtube again. Yesterday, Alex stayed in bed most of the day playing quietly and watching movies. Last night was his best night pain wise. He pushed his button once before bed and then slept through the night. When the team rounded this morning we decided to take him off the pain pump. He has handled it well today. He has complained of pain a few times, but mananged to tough it out knowing if he needed pain meds it means we can't go home.

The plan is to go home tomorrow on full TPN/IV meds. He is getting nothing in his tube at this point. We are also back to draining his G tube. We will follow labs and see how Alex feels and slowly try and get some meds into his tube. When we can give some meds without pain and/or a big increase in his pancreatic enzymes then we will slowly try and get some feeds going.

The doctors have also decided we need to cancel his Heart Cath. It was scheduled for mid April. They feel like he needs to be closer to his baseline before we undergo anesthesia and put his little body through more. We have also decided to reschedule our 6 appointments we had scheduled for next week. We need some quiet time at home!

We are so grateful for everyone who has prayed for us over the last 12 days. Alex is definitely feeling better, but still has a ways to go to get back to our baseline. Everyone who saw him a week ago is amazed at how much better he looks. Now we need his energy and endurance to return. We saw sparks of our spunky guy today.
Ali

PS- I have a very specific prayer request. Alex really needs IV arginine. It is on national backorder. We need some vials to be found for our little guy. Otherwise we are in a rough spot.

MRV

Not even sure where to begin. This admission has seemed so crazy to me. We let Alex sleep until anesthesia called for himthis morning at 8. Once again there was the start of a meltdown. However, by now I knew that Alex's ammonia was high. Despite lowering the protein in his TPN and starting IV arginine his ammonia was still double what it should have been this morning. I tried to reason with and comfort Alex, but he is panicked about anesthesia. One of our favorite nurses is in our pod and was sad about how upset he was. She called the anesthesiologist (who we love) and she came up to the room to give him something so he wouldn't be so scared. We headed to the MRI suite and I stayed with Alex until he was asleep and they were ready to intubate. I left about 9:00 and they told me he would be in the scanner about 9:30. They expected the MRV to take between 2.5 and 4 hours. I got two updates during the MRI. Around 12:30 they called me to head to the surgery waiting area, because they were getting ready to extubate. I was back with my boy about 1:00. He is still sound asleep. So far he is doing well. He looked like he might have been starting to seize at the very beginning of the procedure so they gave him ativan. We are hoping he can keep his temp down.

While Alex was down in MRI, I saw GI. They did not like that he got so distended last night after attempting 2 cc's of meds so they told me to not give any more meds through his tube. It also caused his lipase to double again. They anticipate us going home on TPN and IV meds and working slowly on feeds at home.

When we got back to the room our team was here and already had preliminary results. It does not look like there is a new clot. They can still see a fibrin sheath where his old clot was. We are waiting to hear from hematology whether anything else needs to be done. We are slowly resolving all the issues. It looks like as soon as Alex can come off pain meds, we can head home.

If anything cahnges tonight I wil update again.
Ali

No answers yet!

This has certainly not beentbhe easiest of admissions! Things just seem to be a little harder and I am really tired! The plan was to go down this morning to do an MRV or MRI of Alex's vascular system. We had an okay morning, but Alex woke up pretty agitated. He had already had one meltdown that it took 3 of us to calm him down from. When he heard transport was coming to get him for MRI, he paniced and had another meltdown. About the same time the team got a call from radiology asking why an ultrasound was not done first. So our anesthesia/MRI slot was cancelled. Ultrasound came and couldn't see what they needed. I was worried they were going to have to wait until MOnday to get his MRI done , but we are on the schedule for 8am tomorrow. Hopefully, it will be an anesthesiologist we trust.
In the meantime, almost everyone who has witnessed the meltdowns has agreed it is not Alex. Our thought is that his ammonia is most likely high. It was supposed to be checked last night, but wasn't. However, the pharmacist who normally writes our TPN hasn't been doing it. A dietician who doen't know us has been. I had let her know on numerous occasions that Alex does not process protein correctly and that we keep his protein low in his TPN. Well, today we found out it is more then double his normal amount. That coupled with the fact that he has no medication on board right now to treat his high ammonia and it explains his meltdowns. The IV version of the medication for hyperammonemia has been on backorder for some time, but our pharmacist who always looks out for us found 5 vials that were stashed for an emergency. She pulled them out today and started Alex on them.
Hematology also wasn't thrilled with Alex's clotting labs and has started him on 5 days of IV Vitamin K.
In other news...Alex's labs continue to trend in the right direction. We attempted to give 2 meds through Alex's tube this afternoon, but his stomach is grossly distended and hard this evening so I am not sure if we will continue or not.
I will update tomorrow after the MRV. Please pray for answers.
Ali

Busy

Today we got off a crazy beginning and it continued all day! I woke up to the resident coming to check on us. We discussed the pressing issue...imaging the femoral vein. She let me know that Hematology would be by sometime and the team would be back shortly. I quickly ran to get coffee before the team showed up. Everyone was thrilled with the news that Alex sat up for the first time last night! They thought he looked great. Alex even played with the attending some. We discussed that we were going to complete a 7 day course of both antibiotics he has been on because even though nothing grew in his cultures, he was too sick for anyone to feel like taking him off antibiotics. We decided pancreas wise he is right where we would expect and his lungs seem to be improving. Labs are still all trending in the right direction except his blood counts which are falling daily.

The team had only been gone a few minutes when the hematologist came. It is not our regular hematologist, but her partner who we have seen a handful of times. She felt like the best option was to do an MRV (MRI of the vascular system) to see if the occlusion of the femoral vein is a clot or some other problem. She was honest in the fact that all signs are pointing to a DVT (He also has a lab that looks at clotting that is grossly abnormal), but there is no way to know for sure. The lab could also just be high because of the pancreatitis. The MRV is scheduled for tomorrow morning. Unfortunately Alex has to undergo anesthesia again which makes me a little worried after last week!

Before Hematology had even left, Dr. Pacheco came in. She was also really happy with how Bug looked, but was sure to tell us that we had caused her grey hair over the last week. She decided to go ahead with his IG infusion that we had held off on Tuesday. I asked her reasoning on holding it earlier in the week and she let me know that she was really worried about him and wanted him closer to baseline before adding anything to the mix. She also okayed us to give blood which we knew he really needed. The last change she made was stopping the extra fluids we have had running all week.

At the same time Hematology and Dr. P were there, GI showed up! They have kind of turned over control to Alex. He numbers are still elevated, but at a place where we are hoping to start some meds and trophic feeds into his tube. We need Alex to feel well enough to tolerate some sips of water. At that point we will attempt some meds before moving onto feeds.

Pain team came by and we decided to stop the continuous drip of pain meds. He can still push his button for meds every 15 minutes. He is using it about 2 times an hour. We have to be totally off pain meds before we can go home.

Dr. K came by to check on Bug and discuss our plan for seizures and anesthesia. She thinks we should just keep doing what we are doing. Adding more meds will most likely not change anything.

By 11:00 we had seen a slew of doctors and had a pretty good grasp on a plan. We were invited to the park upstars to see a dance performance. Alex felt up to trying so we transferred him to his chair. He enjoyed the performance and also stayed to watch a magic show. I think the trip out was too much for our first "good day" because he came back to the room and had several meltdowns this afternoon.

Late this afternoon we gave his infusion and he is getting his blood now. I think both of these should help him. I am praying for a smooth anesthesia tomorrow and clear answers. I believe that whether or not he has a clot will determine how long we are here.

Ali

Not much to report

I really thought that today would be a day to address some of the issues and come up with a plan. Unfortunately that did not happen. The good news is that Alex kept his temp in the 99's all day. He was more talkative and this afternoon started to really move some more. That should hopefully start to help clear those lungs. Alex was able to come off oxygen today. Everyone is happy with the progress of his pancreatitis. We lowered his pain meds some more and he has handled it well. We are hopeful we can attempt meds and some trophic feeds into his Jtube by the end of the week. We did not get a plan regarding how we are going to image his femoral vein and see whether he has a dvt or another problem. They were going to talk to radiology and hematology and decide what to do, but I never heard back from anyone. We are still running labs every 12 hours at this point. I am hoping we can go back to once a day tomorrow.  Some of his hematology labs need addressing and he will need a transfusion before we go home. All in all we are moving in the right direction, but still a lot to sort out before we can talk about home.

You can see the difference between Monday and Today!



Terrible Night, Better Day

Last night's labs looked okay so we continued with the fan/ice routine for several hours. The PICU attending was in our room numerous time. At some point it became clear that we were making no progress as Alex's temp continued to be in the 102's and 103's. The PICU doctor felt that it was imperative we break the fever and wanted to give a dose of tylenol. I had her check with Dr. P who okayed 1 dose. Alex's temp did come down with the tylenol. By this point it was after midnight and I finally was able to settle down and go to sleep. I was woken up, at 4:00 AM by the nurse. The tech had come in to do vitals and found Alex laying with his eyes open, but couldn't get him to respond. He realized something wasn't right and went to get the nurse, who in turn woke me up. I am so grateful for the tech who clearly realized the situation and acted on it. When they woke me up they told me they thought Alex was having petit mal seizures. I went to try and get Alex to talk to me. He was staring blankly, not blinking. He would not respond to his name. He would not follow commands. He was twitching some. I was immediately concerned. The resident came in shortly after and also thought he was seizing. She videoed so Dr. K could see it. The PICU doctor was the next to arrive. She was unsure whether he was seizing or he was just too drugged on fentanyl. So she turned off  his fentanyl pump. I would not get a response or here my sweet babies voice for over 4 hours. It was a long 4 hours for sure. Dr. P was here first thing this morning and after examining him, she felt that he was post-ictal (the state following a seizure when they are drowsy, disoriented,etc).  When she left, I decided to grab coffee. When I got back the nurse let me know he seemed to be coming around. I quickly came in the room and climbed in bed with Alex. In a weak voice he said, "I love you and my belly hurts". I was so happy to hear that boy, I cannot tell you!

The team rounded shortly after. The main things they discussed were whether to increase his seizure meds (we are not), we needed to get down to CT, they wanted to consult infectious disease, and whether to switch antibiotics. After the team left, we had a quiet day. We did have to have an IV started to prep for the CT scan. As the day went on, we noticed Alex talking a little more. He also was not quite as still and stiff. He still will not reposition himself in bed at all, but he is at least moving his arms a little! He was back on his fentanyl pump and stayed awake most of the day, confirming to me that last night's episode was not fentanyl related.

Around 2, we went down to CT. Alex was a trooper as always. For someone with the level of pain pancreatitis causes, to have to travel around the hospital, transfer beds, and go through the CT is not fun. He was so strong. I was very proud of him. Our attending was back late this afternoon to check on Alex and was really pleased with how he looked. He was not as thrilled with the results of teh CT. I have not seen the report, but my understanding is these are the findings:
1. His pancreas is swollen and cloudy.
2. His liver and spleen are slightly enlarged, but ok.
3. He has ascites or free fluid in his abdominal cavity.
4. His small bowel is compressed by all the air and fluid.
5. He has pleural effusions and atelectasis.
6. There is an occlusion in his femoral vein that may be another DVT. (We will most likely be looking at doing more testing in the coming days)
I think that is it! Not exactly what we wanted for results, but hopefully they will help us find the appropriate treatments to get Alex well.

I am sure tomorrow will be a busy day. Alex is still running temps in the 101-102 range. He has not been under 101 today. We are doing labs every 12 hours. While Alex was better this afternoon, he is still a long way from well. Please continue to pray for this sweet boy!
Ali

Out of the PICU...

and possibly back!

Alex had a pretty good night! By this morning his lungs had improved a tad bit. After looking at the last chest xray and the seeing the ridiculous amount of air in his bowels along with pancreatitis the PICU attending was not surprised at how much he was struggling to take deep breaths. The decision was made to once again increase his pain meds in the hope of helping his respiratory status. We also switched his albuterol from as needed to scheduled every 6 hours. Everyone felt he was stable enough to move from the PICU back to our "normal IMU unit".  AS we waited for a bed to open up, Alex continued to run temps. By mid-day his temps were consistently between 102.5 and 103.5. We also couldn't get his HR under 135 even when sleeping.  Around 2:00, we got to our new room. We continued with the same trend. Alex was also extremely quiet. He is not talking at all. For anyone who knows Alex you know how unusual that is. This evening Dr. Pacheco came to see us again. She did not like his vital signs and liked the way he looked even less. She once again called the PICU attending to come take a look at him. We ran another large set of labs. We also gave him a large bolus of fluids. The PICU attending told me that you treat pancreatitis much the same way as burn victims when it comes to fluids. We have him packed in ice and have a fan blowing. The PICU has just been to check on him again. I am unsure at this point whether we will stay put or move back.
I continue to pray for our sweet boy to feel better.
I appreciate all the prayers being sent up for Buggy.
Ali

PICU

Unfortunately enough really rough day for our little guy! Alex's temp went up in the middle of the night and we could not get his heart rate down. After several hours of watching him, the PICU attending was not comfortable with the way he looked and decided he needed to be moved into the ICU. She is the same Dr. who was on call in December of 2010 when Alex was septic. She is one of the main reasons our boy is still with us today. She remembers that night and how quickly Alex crashed and was not willing to take any chances. As much as I didn't want to move, I love that she cares so much about Buggy and wanted to be sure he was safe. From the time we got back to the PICU it was clear that Alex's oxygen saturations are not what we would like for them to be. We have struggled for most of the day to even keep them in the 90's. Alex is unable to take deep breaths without pain. After morning rounds they decided to increase his pain meds in hope s of getting him to breathe better. Unfortunately, it did not work. Respiratory therapists have kept a close watch on him all day and by tonight his left lung has virtually no lung sounds and his right lung is considerably diminished. After talk of starting CPAP, tonight we decided to try oxygen first and his saturations are the best they have been all day. I am hopeful he can keep them up through the night.

His temps have climbed all day. For most of the day they were between 102 and 102.5. By this evening they had reached 103.4. We now have a fan blowing on him and have taken away his blanket. He is not happy to say the least.

His labs this morning brought both good and bad news. His liver numbers while still extremely high aree at least trending down. However his pancreas levels looked much worse today. His amylase is about 3500 (should be under 100) and his lipase which we had previously been told was >3000 is actually 25,000 (should be under 300). We did a chest xray and liver ultrasound today. The chest xray showed low lung volume and dilated loops of bowel. His ultrasound was not read yet.

So all in all I think we will be in the PICU a little longer. No one feels he is as stable as they would like right now. Although his vital signs are better tonight then they have been all day. I am hopeful he will turn the corner tomorrow.

Please pray for Buggy's comfort and that he can turn the corner and start the road to recovery.
Ali

Pancreatitis

This will be short as I am wiped out! I went to sleep shortly after blogging last night. I was sound asleep until Alex woke me at 4:00 this morning complaining of his belly hurting. I assumed it was his new tube and went to ask if he could have something for pain. The pain quickly progressed and even after one dose of pain meds he was miserable. Then he started retching and gagging. I had them page the doctors again. I asked them to run an Amylase and Lipase (blood tests to check his pancreas) as the pain was becoming unbearable. Even after a second dose of pain meds he was writhing, thrashing and crying in the bed. He just kept begging me to help him. His lipase came back to high to quantify and his amylase was also extremely high meaning he has acute pancreatitis once again. For most of the morning we were not able to control his pain or nausea. He was screaming out like I have never seen him. There was talk of sending him to the PICU where we could be more aggressive in pain management. Luckily, we have awesome doctors and pharmacists here who know Alex well and started him on a PCA pump of fentanyl. He is able to push a button every 20 min to get a dose of pain meds. They have also doubled up his nausea medications. After spending most of the day either awake and crying/screaming or sleeping, he woke up around 4 pm and asked for his ds. It was like music to my ears. He is still in some pain. He is pushing the button quite frequently. His heart rate skyrockets everytime he moves in bed, but he is doing SO much better. For a few hours he played ds and watched movies before going back to sleep.  His liver numbers are now the highest we have ever seen in Alex (one is almost 700 and the other just under 400). We have been waiting on ultrasound to see if there is anything we can pick up. Unfortunately it is the weekend so the one US guy is swamped. Alex is also running a low grade temp. There are some changes in his cbc, but the decision for right now is to watch and wait before starting antibiotics. I think that is all of it.

I will continue to update facebook during the day and the blog at night. Thank you again for all the prayers. They were needed (and felt) today!
Ali

Rough Night

The week has gone from crazy to crazier! After Alex's labs Monday and a visit to the pediatrician, it seemed that Alex had a virus and we were going to stay home and manage him from there. However his liver enzymes had jumped about 150 points from last week so it was decided that we needed to repeat labs on Tuesday.
Tuesday's labs were not good. His CBC showed that his body was quite neutropenic and his liver numbers had jumped by about another 100 points. But he seemed to be feeling better.
Wednesday his cbc looked the same, but his liver once again jumped by almost 100 points. His cough was also starting to sound pretty nasty.
Thursday's CBC was marginally better and his liver numbers while still trending up, did so by a much smaller amount. I really began to think we might escape an admission. However, my little Buggy had other plans! He was watching TV in his room. He got  down from his bed to get a book and his tube was caught on one of the drawer knobs (He has a captain's bed). As he went for the bookcase, his Jtube was pulled out. He cam out to the family room crying, bleeding, holding his tube in his hand. I quickly inserted something to hold his stoma open then began the mad dash to pack and get to the hospital. We made it to the ER about midnight. After a long night in the ER with virtually no sleep we made it up to a room around 5:30 this morning. There was still no sleep to be had as our room was a revolving door of people coming and going. After lunch Alex and I crashed and slept for several hours. We were awakened about 4:00 by someone coming to take us down to the OR. We waited for a while. Alex was nervous as he hates anesthesia and we were using someone new to us. Alex was finally taken back for a VERY short surgery to replace his tube. We spent a short time in PACU before heading back to our room. As soon as we got up to the room, I had a feeling something wasn't right. I couldn't put my finger on it, I was just uncomfortable. A resident came in and I expressed my concern that Alex was not on monitors so soon after surgery and with him still not awake. Then the nurse came in and I told her his tongue seemed swollen. Another resident came in and Alex started seizing. She was worried and quickly to made the decision to transfer him to our "normal" unit. (He had been on the general peds floor). We also hurried to give a dose of keppra (his seizure med). Alex seized off and on for about an hour and a half. His heart rate was very high with each seizure and he was having a hard time with his orientation, not to mention the involuntary movements of his legs, arms and tongue. We have run labs and he is finally resting comfortably. His little face is red as a tomato, not quite sure what that is about, but everything else seems ok. I am hoping the seizures are over. No matter how many times you see a seizure it is always scary. I am so thankful for the incredible doctors and nurses who always take such good care of Alex and were so quick in acting tonight.
Please pray for a peaceful, restful night for both Bug and I!!!!
Ali

A visit, a trip, and a fever

What a crazy few weeks! Mimi and PopPop flew in on March 2nd for a visit. We always love having our family around. Mimi and Alex both had appointments with Dr. Koenig on March 6th so after one day of relaxation we headed to Houston. Using Hotwire, we were lucky to be staying in a beautiful hotel. Unfortunately, I started not feeling well the day before we left. I really pushed myself to try and keep going so we could enjoy our trip, but I felt pretty bad the whole time. On Monday we spent the morning at the hospital and then had a quiet aftenoon at the hotel. Tuesday we had our apointments. We just saw Dr. Koenig in January and February so there wasn't too much to discuss. Our main concern from a neurological standpoint right now is that Alex is having increased neuropathy and we haven't looked at his syrinx in over a year. We have been trying to avoid putting Alex under anesthesia for elective procedures as he always struggles and it sets us back. However, we cannot wait any longer. If the syrinx expands it can do damage to the spinal cord. So we will be scheduling that shortly. We also discussed a possible 24 hour VEEG, but decided against it right now. Alex has been having some "tremors" at night which we thought might be an increase in seizures. After talking to both Alex and I, Dr. K is hopeful it is just sleep myoclonus so we will just wait and watch for now. I think that was mostly it. I was also able to quickly check in with GI about a few concerns, mainly that we have not been able to increase Alex's feeds anymore and also his extreme bloating is back after stopping the antibiotics we were on. We are still discussing our options.

Once we left the clinic, we headed to Kemah Boardwalk for an afternoon of fun. Alex loved the rides, especially the drop zone. It was hysterical watching him. He kept getting off and insisting he needed to get back in line (there was no one there) and running back around the ride to the entrance. Then he would scream and giggle the entire ride before doing it all again!

After one more night in Houston, we headed home on Wednesday. PopPop and Bruce did some much needed work on the house. It was so nice for Bruce to have someone who knows what they are doing to help him. PopPop definitely earned his keep!!!! Hopefully, I'll have pictures for next update! Thursday we took Alex to see a movie. It is so awesome to go to a matinee during the week because it is always empty! Friday we headed to Great Wolf to let Alex play some MagiQuest.  We were so sad to see Mimi and PopPop go yesterday. We always wish we had more time to enjoy our family. Unfortunately, by yesterday morning Alex had a nasty wet cough and a low grade temp. It was up to 101 by midday and I had to decide whether to head to the hospital or not. I decided to give a dose of tylenol (which we normally don't use bc of Alex's liver disease) and so far his temp has stayed in the 100's. He doesn't feel great, but is holding his own. I am so happy we have managed to survive the weekend without having to head to the hospital. I will have to take him to the pediatrician tomorrow as I am sure he has what I do and I needed antibiotics.

We are hoping for a quiet few weeks before we need to head to Houston the first two weeks on April. Hopefully, things will settle down and give us those few weeks of quiet we so desperately need.
Ali