Sorry for the lack of updates yesterday. I was exhausted by last night. Yesterday started bright and early. I had the nurse in Jacksonville wake me up at 2:30 to catch a 3:00 AM taxi. We arrived at the airport and made our way through security without any trouble. We had a 5:00 Am flight that landed at 7:30. Alex and I both dozed off most of the flight. We were able to grab our bags and meet Ben to get to the ER. Even with the traffic we were at the hospital by 8:30. They were expecting us. We had visit fro Dr. K and Lakeesha as well as a surgery resident. We got a room quickly, unfortunately it wasn't on our normal unit. They were totally full. We went to the room and met with the team. We were expecting a quiet day and surgery most likely on Saturday or Monday. At 12:00 our nurse came in and said the OR was calling for him. He was probably the most panicked I have ever seen him. He cried to the point of hyperventilating and finally fell asleep in my lap. We were in pre-op for a while and then he was taken back. We are very fortunate that the surgeon was able to just dilate his stoma and pop the tube back in. Because we were going back to a floor that deals with less complicated kids we had to stayin recovery longer. His vitals were stable, but not normal. Finally at 6:00 pm we decided to send him back up to his room. His vitals continued to be troublesome. (HR's in the 50's and blood pressures of 60's/30's for those that are curious). The process was expedited to get us back to our usual unit. We moved rooms at 9:00 last night. Alex slept comfortable through the night. He is VERY quiet today and is on the verge of running a temp. We are watching him closely. His labs look pretty good. His clotting numbers aren't great so we are holding his lovenox shot which Alex is really happy about. If it is high again tomorrow then we will have to treat it.
I have so many people to thank......
To Mimi and Pop-Pop- for getting us to the hospital quickly and holding down the fort that first night so I could sleep a little.
To Grandpa, Aunt Jen-Jen, Uncle Jimmy and Skye-Skye- For putting up with another crazy, stressful end to a vacation.
To Amber- For being such an incredible friend and driving 2 hours to spend Thursday with us. Having you there made the day so much better. we miss you.
To the staff at Wolfson's Children Hospital- For being so compassionate and understanding. They really worked hard to make us comfortable and try to get us home.
To Dr. K and Keesha- For always being there. For loving us and being willing to work for whatever Alex needs.
To Missy and Ben- You guys are the truest friends anyone could ever ask for. Whenever we have a need you are there. It doesn't matter what day or time I know I can always count on you guys.
To our anesthesiologist and surgeon- both of who changed there schedule yesterday to ensure that Alex was less scared and cared for by people who know and love him. (It sure made mommy feel better too)
To all our nurses and Doctors at CMHH- For making this our second home. A place we feel loved and safe. For being our friends as well as our caretakers. We love you guys and are so happy to be back here.
To all of our friends and family- who prayed, called, txsted, emailed and sent ideas to help us get home. We continue to feel blessed by your love. Your friendship buoys us at our lowest moments.
THANK YOU!
Ali
Alex and Maddy
Saturday, March 5, 2011
Wednesday, March 2, 2011
The Whole Story
I have so many fun and cool things to blog about from this past week. And of course lots of pictures, but those will have to wait.
I am sure some of you are wondering what is going on. Here is the whole story to fill in the gaps left by facebook! Yesterday, right before dinner, Alex and Skye were playing outside and spending some good bonding time on their last night together. Alex came up the back steps with a look of panic on his face. i thought that maybe Skye was hurt and he was coming to get us. As soon as he came in the door, I saw blood dripping down his stomach and a hole where his Jtube should be. We all immediately sprang into action. Alex was in quite a bit of pain. Alex's Jtube was placed 2 years ago in a surgery that took over 4 hours. He was opened up and had this tube surgically placed. I quickly grabbed our spare Gtube to see if i could get it in his intestines to keep the stoma (hole) open. I could not get it in and it was too painful to play around with. It was very clear we were heading to the hospital. We headed to the local hospital. They quickly let us know that they could not help us and that we would have to go to the children's hospital in Jacksonville. We drove the hour and a half to Jacksonville (the first hospital was not even equipped to transfer a pediatric patient). We arrived at the second ER around 9:30 last night. The two main concerns were damage to his intestines and a possible infection. We got here and they didn;t do much before deciding he would need surgery and they would just observe him until a transfer could be arranged. I did at least convince them to run some labs which looked okay. They started the process of transferring us to Houston when we hit our first road bump. Memorial Hermann's plane had left to fly out of the country and could not come get us. This hospital doesn't have a fixed wing plane so they started making some calls. They found a company capable of transferring us, but they would not do it without a $15,000 credit card authorization to ensure their payment. We do not have cc's so that was out. After much frustration it was clear that we were stuck until the morning when insurance authorization could be aquired. Today we spent most of the day in the ER still waiting on approval. Around 3:00 we were finally given a regular room. The social worker, the doctors, the transport company and the team in Houston all worked tirelessly to get thenecessary approval for us to be transferred. At 7:00 tonight I got word that Aetna has denied a transfer. We are still working on an appeal and also trying to get medicaid to pay it. If neither of those happen we aren't sure what to do. We do not feel it is safe for Alex to have surgery in a hospital unfamiliar with his care and then have to navigate his metabolic state post anesthesia and restarting feeds, etc. Our only other option is to get our home health to send supplies to run IV fluids while we try to take a commercial fight from here to Houston. No one thinks that is the safest thing for Alex either. So right now we are stuck between a rock and a hard place with no good options. We are just praying that one of the insurance companies will do what is best for Buggy and get us home.
On the bright side, Bug seems okay and has been an absolute angel. He really wants to get to Houston, but I could not ask for better behavior.
I will continue to update on facebook as things develop.
Thank you for being so loyal and loving our family through all our ups and downs.
Ali
I am sure some of you are wondering what is going on. Here is the whole story to fill in the gaps left by facebook! Yesterday, right before dinner, Alex and Skye were playing outside and spending some good bonding time on their last night together. Alex came up the back steps with a look of panic on his face. i thought that maybe Skye was hurt and he was coming to get us. As soon as he came in the door, I saw blood dripping down his stomach and a hole where his Jtube should be. We all immediately sprang into action. Alex was in quite a bit of pain. Alex's Jtube was placed 2 years ago in a surgery that took over 4 hours. He was opened up and had this tube surgically placed. I quickly grabbed our spare Gtube to see if i could get it in his intestines to keep the stoma (hole) open. I could not get it in and it was too painful to play around with. It was very clear we were heading to the hospital. We headed to the local hospital. They quickly let us know that they could not help us and that we would have to go to the children's hospital in Jacksonville. We drove the hour and a half to Jacksonville (the first hospital was not even equipped to transfer a pediatric patient). We arrived at the second ER around 9:30 last night. The two main concerns were damage to his intestines and a possible infection. We got here and they didn;t do much before deciding he would need surgery and they would just observe him until a transfer could be arranged. I did at least convince them to run some labs which looked okay. They started the process of transferring us to Houston when we hit our first road bump. Memorial Hermann's plane had left to fly out of the country and could not come get us. This hospital doesn't have a fixed wing plane so they started making some calls. They found a company capable of transferring us, but they would not do it without a $15,000 credit card authorization to ensure their payment. We do not have cc's so that was out. After much frustration it was clear that we were stuck until the morning when insurance authorization could be aquired. Today we spent most of the day in the ER still waiting on approval. Around 3:00 we were finally given a regular room. The social worker, the doctors, the transport company and the team in Houston all worked tirelessly to get thenecessary approval for us to be transferred. At 7:00 tonight I got word that Aetna has denied a transfer. We are still working on an appeal and also trying to get medicaid to pay it. If neither of those happen we aren't sure what to do. We do not feel it is safe for Alex to have surgery in a hospital unfamiliar with his care and then have to navigate his metabolic state post anesthesia and restarting feeds, etc. Our only other option is to get our home health to send supplies to run IV fluids while we try to take a commercial fight from here to Houston. No one thinks that is the safest thing for Alex either. So right now we are stuck between a rock and a hard place with no good options. We are just praying that one of the insurance companies will do what is best for Buggy and get us home.
On the bright side, Bug seems okay and has been an absolute angel. He really wants to get to Houston, but I could not ask for better behavior.
I will continue to update on facebook as things develop.
Thank you for being so loyal and loving our family through all our ups and downs.
Ali
Tuesday, February 22, 2011
Back to Normal...Kind of!
We are slowly seeing our sweet boy return to his playful, loving self. While I know he is still dealing with some pretty intense feelings of grief and fear, he is so much more himself. His behavior has stabilized and he is laughing more once again. I am so happy to have my little angel back. He is still having some pretty strong "mommy attachment" where he doesn't want me apart from him, but overall he is doing much better. We met with a psychologist on Monday who specializes in working with children with chronic illness. She was really good with him and seemed more then capable of taking Alex on. We are hopeful that this will turn into a long lasting, trusting partnership that will help Alex grow and mature and confidently navigate all the struggles he faces.
One of the ways we have tried to calm Alex's fears and renew his spirit is with special play time with Mommy and Daddy each day. This is dedicated time when we each focus on him and do not answer the phone, get on the computer or become distracted in any other way. We are also doing a "Family Fun Day" each weekend. We made a list of things we would like to do as a family. Each weekend Alex gets to choose something he would like to do. It has been really fun for all of us. This past weekend we had planned on going to the aquarium as that is what Alex had chosen. However, when we woke up Saturday morning, Alex declared he didn't want a typical family fun day. All he wanted was to bring the dogs back inside. (For those of you that don't know, we have two labs. Several years ago when Alex spent 9 months in the hospital and his care became more intense, we had made them outside dogs.) Bruce and I talked about it and agreed we could bring them in. So off to Petsmart we went. We Bought shampoo, new collars, new toys and treats. We washed them and coaxed them back inside. Poor Hayley and Hershey didn't know what to do with themselves for the first hour. They just wandered around. Since then they have settled right in and Alex is thrilled. Hayley is sleeping in his room each night. They follow him around. He has tortured them with "medical procedures" while he plays animal rescue club, has hugged and snuggled Hayley until she runs away, etc. He is just so happy to have our other babies back inside.
In other news, we leave this week to head to Florida for our yearly visit and to celebrate Skye's birthday (Alex's cousin). We are excited to see family and have some fun time. We are very hopeful that Alex can stay healthy as some of his labs that show how well he can fight infection don't look great.
One of the ways we have tried to calm Alex's fears and renew his spirit is with special play time with Mommy and Daddy each day. This is dedicated time when we each focus on him and do not answer the phone, get on the computer or become distracted in any other way. We are also doing a "Family Fun Day" each weekend. We made a list of things we would like to do as a family. Each weekend Alex gets to choose something he would like to do. It has been really fun for all of us. This past weekend we had planned on going to the aquarium as that is what Alex had chosen. However, when we woke up Saturday morning, Alex declared he didn't want a typical family fun day. All he wanted was to bring the dogs back inside. (For those of you that don't know, we have two labs. Several years ago when Alex spent 9 months in the hospital and his care became more intense, we had made them outside dogs.) Bruce and I talked about it and agreed we could bring them in. So off to Petsmart we went. We Bought shampoo, new collars, new toys and treats. We washed them and coaxed them back inside. Poor Hayley and Hershey didn't know what to do with themselves for the first hour. They just wandered around. Since then they have settled right in and Alex is thrilled. Hayley is sleeping in his room each night. They follow him around. He has tortured them with "medical procedures" while he plays animal rescue club, has hugged and snuggled Hayley until she runs away, etc. He is just so happy to have our other babies back inside.
In other news, we leave this week to head to Florida for our yearly visit and to celebrate Skye's birthday (Alex's cousin). We are excited to see family and have some fun time. We are very hopeful that Alex can stay healthy as some of his labs that show how well he can fight infection don't look great.
We are so thankful to our incredible friends and family who have lifted us up in prayer and
continued to encourage us through these rough times.
continued to encourage us through these rough times.
Ali
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