Just a quick note to let you know that we arrived safely in Florida. We are having fun and Alex is doing well.

Ali

We got home late last night! We were discharged around 4. We hit several accidents on our way our of Houston so it took longer then usual.

I have spent today unpacking and repacking.

We leave tomorrow to head to Florida for Skye-Skye's (my nephew) Birthday. I will update when we get back.

Thank you for all the prayers over the last week.
Ali

Alex always seems to throw a wrench in the plans!

Yeste​rday we awoke to the news that Alex's potassium was a critically low level. After much discussion about how to replace it, we decided to add potassium to his IV fluids. His potassium came up and we were expecting to go home this morning. Once again this morning his potassium is low (but not as low). We are still hoping to get out this afternoon. I will know more once I see the doctors.
Ali

Not much to report. Today has been a much better day. Alex was much more himself. He played, watched movies and flirted with the nurses. Just a regular day in the hopsital!

Al​ex's feeds are at 30 cc/hr and he continues to tolerate them just fine. The plan is to run a bunch of labs in the morning. We will stop his antibiotics tomorrow and watch him for 24 hours. We should be home sometime Monday afternoon.

The roller coaster has continued.

The good...Over​all, Alex is doing better. He is still very quiet and has barely been out of the bed. But at least he has stayed fever free today. Feeds are going well. Alex is now at 20 cc/hr. He is tolerating them with no pain.

The bad...Alex is sleeping quite a bit. I woke him up after a 5 hour nap yesterday and woke him up after 12 hours this morning. He slept for 4.5 hours this afternoon. He is still complaining of a headache and there is some debate over whether it is still from the lumbar puncture or because of his illness. He remains on 2 strong antibiotics. I do not know the plan on if we will continue these or come off them. He is extremely pale and is pretty much just laying in bed watching videos all day.

We are hoping things continue to improve and we head home Monday.

Than​ks for checking in.
Ali

What a roller coaster this stay has been!

Alex had a horrible night. He did not sleep at all. His back hurt and he tossed and turned and cried. He also had a fever all night. It ranged between 100.6 and 101.7. He woke up this morning and was really puny. He just wanted to lie in bed and cuddle with me. We spent the whole morning watching videos and lying around. His cultures have all been negative so we are leaning towards a viral infection, but he is on 2 strong antibiotics to be sure we are covering our bases. His temp satyed up in the 101 range all morning and I was starting to think we were never going to turn the corner.

Dr. Koenig came over around 11:30 and cured him! It's official she can perform miracles. He perked up as soon he saw her. We took his temp while she was there and it was the lowest it has been since Sunday. So the plan for now is to attempt some very slow feeds into his tube. (We can not wait any longer as he has not had ffeds since Sunday and he is down to 31.5 lbs) If his fever returns we will draw labs and reevaluate the feed situation. Hopefully he will remain fever free.

We are still praying to get out of here, go home, and repack in time to get on the plane Wednesday to head to Florida. The doctors will not commit one way or the other. Today will be telling.

As always please keep Bruce's job search and our insurance situation in your paryers. Bruce has seen a definite increase in the volume of calls and interviews he is receiving. We remain hopeful the perfect job is within grasp.

Ali

Well today certainly did not go as planned! The morning started off great with Alex feeling well enough to go for a little walk. He even went to the playroom. As we were playing he started complaining of a headache again. I asked him if he thought we needed to go back to the room. he didn't want to. I felt him and realized he was warm. I took his temp and it was 101.5. So we were forced back to the room. That is above our fever threshold so we had to start running labs, cultures on his line, a urine culture, a chest xray and a nasal wash to look for viruses. So far his nasal wash and chest xray are normal. His labs show a definite infection. The cultures won't be back until tomorrow. As of last check his temp was up until 102.7. We are not sure where the infection is at this point. He is still complaining of pain in his back. But his spirits are up.
He was happy to get to play with his child life girls and the music therapist. He has also been happy to see many of his favorite nurses. We have not yet started feeds as we are waiting to see how he does overnight. We will be in the hospital for at least another 48 hours as we rule out a line infection.
T​hank you for caring about our Buggy.
Ali

Poor Bug has not been feeling great today.

We had an okay night. We were up a couple times because his temperature was 93.2 and the tech was worried. It was clear pretty early this morning that he really wasn't doing well. He woke up with a fever and was holding him self very still. Any little movement was causing his head to pound. We were thinking we were going to have to put him through another procedure with anesthesia tomorrow to try and correct the leak of spinal fluid (that was causing the headache). BUT...this afternoon he is feeling a little better. He is still complaining of a little pain, but he is attempting to sit up for short periods. So we are hopeful the leak is healing on its own.
We also spoke to Dr. Koenig about the seizure he had yeasterday. We are going to have to limit the number of times under anesthesia. We were also hoping to do another 24 hour EEG while we are here to see if the shaking feeling he has been having is actually more seizure activity. Unfortunate​ly it doesn't look like we can get it done.
So we have not started feeds yet as we are waiting for his temperature to come down. We also need to be sure that he will not need the other procedure tomorrow.
Hopefully, we will have a good night and be on our way to recovery!
Al​i

This will be somewhat quick as I am exhausted!

W​e had a fun weekend as we always do at the Knights. Alex and I arrived Saturday. The kids quickly picked up where they left off. I have loved to watch Alex and Samuel's relationshi​p grow. Alex finally has the little brother he has always wanted. It is awesome to see how loving and caring they are together. The best part of their relationshi​p is that they make each other feel normal. From licking and smelling foods together, to getting procrit shots and even hooking up to their D10 last night in preparation for their MRI's. It is just easier when you have someone like you to navigate this crazy world. I pray this frienship continues to grow and flourish.

Al​ex and I had to leave their house this morning at 4:30 to head to the hospital. We were taken back to the MRI holding area around 7:30. We quickly got Alex started on his usual large concoction of drugs to sedate him. Unfortunate​ly he suffered from another seizure during this process. It was pretty short and we continued. I left Alex at 9:00 and he was getting ready to be intubated. Our favorite anesthesiol​ogist was taking care of him and kept me informed. I got a call around 11 to inform me that 2 of the tests would not be performed as the technician had called in sick. I was pretty upset as 1 of these tests has been rescheduled 3 times and has needed to be done for 18 months. The only good thing is that instead of 6 hours, Alex was done in 4. We completed his brain MRI, spine MRI and lumbar puncture. I was back in recovery with Alex around 1:15.

He slept for a while as we tried to sort out soem confusion regarding our admission. We got up to our room around 4:15. We had been told that Alex needed to lay completely flat for 5 hours due to the lumbar puncture. We did that and around 6:15 he attempted to raise the head of his bed a little. Unfortunate​ly, he immediately got a headache which is caused by a slow leak of spinal fluid at the puncture site. We attempted to lie down a little longer and then sit up again with the same results. The neurologist on call came back again. After some discussion with Dr. Koenig it was decided that he needed to stay flat the remainder of the night and hope that it will be better tomorrow. We also gave a dose of tylenol. We have the availabilit​y to give a stronger pain medication if Alex feels it is necessary. If this is better in the morning great. If the headache does not get better it may be necessary to intervene again. We will just watch and see. Because of the seizure we have also discussed repeating an EEG. We will make a decision on that with Dr. K tomorrow.

Al​ex is sleeping now. We still have him on oxygen as has become our usual after anesthesia. He has been a trooper and even tried to smile and greet some of his old buddies as the visitors continue to come by. He is so loved around here. It makes him feel really special that everyone is so happy to see him.

The plan right now is to assess how he is doing tomorrow and whether we are redy to progress with our plan to restart feeds. Once I know more I will update.

Than​ks for all the prayers.
Ali

Thank you for all your prayers and good wishes!

What a crazy week. We got a foot of snow yesterday!!!! Alex had a ball playing in the snow. He loves when Daddy throws snowballs at him.

We leave tomorrow for our trip to Houston. We will be having a slumber party for the weekend and then heading in to the hospital bright and early Monday morning. We are hoping and expecting to be home late next week. On a bright note, his labs this week look better then ever!

Bruce had a good interview on Thursday morning. He had to postpone today's until Monday due to the conditon of the roads early this morning. We continue praying and believing the right job is just around the corner.

Plea​se pray for safe travels and good health for Buggy on Monday. This procedure is longer then we typically like him under anesthesia but it needs to be done.

Ali

Our quiet boring few days and weeks took a turn this morning....​

I got a call from the hospital letting me know that Alex was scheduled for a test with anesthesia on Monday. WHAT???? So after some digging around the scheduler figured out that all the testing we have been meaning to do on Alex- 5 procedures are scheduled. This is somewhat of a blessing. We have been putting off some of this testing for 18 months. So we will head to Houston this weekend once again! Alex will have an MRI of his brain, an MRI of his entire Spine, a lumbar puncture, an SSEP, and a hearing test. The brain MRI and hearing test are routine mito tests that have to be repeated periodicall​y. The lumbar puncture is to rule out a neurotransm​itter disorder we just found out Mimi has and could be adding to Alex's symptoms. The spine MRI and SSEP are to try and get to the bottom of Alex's syrinx (fluid in his spinal cord) and make sure it is not getting worse. So poor Buggy will be put through the ringer. We will spend a couple nights inpatient to get Bug back on his feet and then we will come home.
Luckil​y the Knights are once again going to let us invade their space. We planned to go down on Sunday, but Missy convinced me to come down Saturday and give the kids more time together.
Bruce has second interviews with 2 companies the next 2 days. Tomorrow is for a position he would love here in the DFW area. Friday's interview is in Houston with a small company. Please pray for him to get an offer from one of these two companies.

I will have my computer with me this trip so I will update from the hospital.

Al​i

Sorry for the lack of updates. Not much going on around here!

Alex is hanging in there. He is still fighting this sinus infection. Despite being on his 3rd week of antibiotics he is still having a runny/stuff​y nose and fluid in his ears. he is also feeling dizzy/shaky numerous times a day. I have not heard back from the doctors yet on what the next step is. Alex is also having a hard time with his blood sugars right now. Within a few minutes of being unhooked from his tube his sugars are dropping into the 60's. I am not sure what is causing that, but think it must be related to the sinus infection. The other problem we are having is that my sweet Buggy is a bear right now. My best guess is that between the antibiotic and the sinus infection he isn't feeling well and he is having numerous tantrums and meltdowns a day. Not at all like him. Please pray for Buggy to feel better and for my patience.

We are still hoping and praying for Bruce to get a good job! He has received more calls recently so we are hopeful that something will come along soon.

Thank you for all your love and support.
Ali

This has been a pretty quiet week around here. Alex is doing well. He does not seem to be clearing his sinus infection. I am waiting to hear back from the immunologis​t on if we need to try something different. Otherwise he is doing pretty good.

Over the weekend, we flipflopped Alex's room and the guest room. Alex has more space now. He is enjoying his new room. He has settled in without a problem. Now, we just need to paint it.

Bruce and I are having a harder week. The stress level is pretty high as we are at rock bottom financially. We are scared and stressed. The air is palapable in our house as we try and figure out what to do. The problem is there are no answers. Bruce conti​nues to send out huge amounts of resumes. He has had a few interviews. We are trying to remain hopeful that the right job is just around the corner. We ask that you all continue to pray for us.

Thanks for loving us and sharing in our lives.
Ali