Since Caitlyn's second sclerotherapy treatment in January I decided to take a small hiatus from blogging. With going to school full time, Caitlyn having another bout in at the Children's Hospital, another sclerotherapy procedure in March, and more surgeries to come I just decided to take time from giving updates and just focus on Caitlyn and myself. So let's get back to where we left off because there is so much to tell!
Just a couple of days after blogging in January Caitlyn and I were back at my local hospital. I took her in because she had been experiencing a horrible case of diarrhea lasting since her sclerotherapy procedure earlier in January. I had taken her to urgent care a few days before where they took some stool samples but those tests were all coming back negative. On this particular evening, the diarrhea was now accompanied with a fever, so to the ER we went. The ER doctor was going to send us home since her blood work and a urinalysis that they ran was coming back normal. Before we left he wanted to give her another dose of Ibuprofen since her fever was starting to go back up. Immediately after administering her the orange liquid Caitlyn proceeded to vomit it all back up. The doctor decided, and I agreed, it would be best just to keep her overnight for observation and see how she felt in the morning.
Throughout the night her fever started getting worse, reaching a max temp of 105. The nurse kept administering Tylenol in the form of a suppository which seemed to help but the fever just kept coming back and the diarrhea was still holding strong. I called down to Milwaukee to let Dr. Kelly (Caitlyn's oncologist) know what was happening. He said he did not want to transport her down so late at night, instead he would speak with Caitlyn's pediatrician in the morning and come up with a plan then.
The next day there was a lot of back and forth of the doctors trying to get a hold of each other. Finally, a plan was set for Caitlyn to be transported by ambulance from Eau Claire to Milwaukee. The transport had to be made soon because there was a major snow storm heading towards Milwaukee and it wouldn't be safe to drive once it hit. After waiting all day a new plan was made to transport me and Caitlyn by jet to Milwaukee. They figured the roads were just too bad to drive one and flying would be safer. It wasn't until 9:20pm when we were up in the air and on our way. Once to the Children's Hospital we were warmly welcomed onto the HOT Unit.
Since throughout the day, Cailtyn's fever had started to subside they hooked her up to some fluids, took some blood samples and stool cultures, and she was monitored for the night. Over the course of our two week stay, all stool samples and blood tests were coming back normal. Food was starting to, literally, pass right through her. She was put on complete stomach rest and was given a fluid through a PICC - which Dr. Johnson placed - called TPN. This had all of the nutrients she would need while her stomach was resting. While on the TPN her diarrhea started to subside and she was starting to act more and more like herself.
A gastroenterologist, Dr. Noel, thought it would be worth it to do an upper and lower endoscopy. Come to find out, there is a possibility that Caitlyn may have Celiac disease. To be quite honest, I don't think she does. I have been feeding her a regular diet, without excluding gluten, and she has done just fine. Gaining weight and feeling great! Another upper endoscopy will be done towards autumn of this year and we will see what Dr. Noel finds then.
Even with the results that Caitlyn might have Celiac it still didn't explain the sudden horrendous bout of diarrhea lasting for four weeks. The assumption is that she caught a virus and had a hard time fighting it off and the end result was the diarrhea. She had a nasogastric tube put in place because the doctors didn't want to immediately start her back eating again once she was off the TPN. Instead, they started her on a Similac formula called Alimentum which was gradually increased as the days wore on.
Caitlyn was discharged home and left with the NG. After pulling it out about seven minutes after the nurses placed it in the first time, she had seemed to forget all about it; so I wasn't too concerned with taking her home with it still in place. Needless to say, the little stinker pulled it out just two days after being home.
Since then there she has been healthy and gaining weight with no signs of Celiac. We were back down in Milwaukee for Dr. Johnson to do another round of sclerotherapy at the end of March. This time, her procedure was actually filmed and I was interviewed. Caitlyn was a natural on camera! Caitlyn and I were again warmly welcomed by the nurses and doctors at Children's hospital and stayed the night for observation. She was discharged the following afternoon with no signs of any complications per usual.
Once she was discharged we headed on down to see Dr. Thometz (Caitlyn's orthopedists). While she was sedated for the sclerotherapy, occupational therapy came in and made a new brace for her to wear since she had completely outgrown the one that she has been wearing since September. The most recent xray of her hip showed it was "subluxing out" which meant that it was still in but it was starting to come out - at least that's what I understood from our visit with Dr. Thometz. Her hip socket is still pretty shallow and we are hoping that by keeping her in the brace during naps and at bedtime it will help fix itself. If not, then she may require another surgery down the road.
While we were there Dr. Johnson and I discussed the idea of taking Caitlyn to Boston to see a world famous doctor - Dr. Fishman. The purpose would be to get an opinion about Caitlyn undergoing a debulking surgery that would help take down the girth of her leg. Caitlyn's team of doctors were in agreeance and felt that Boston was an appropriate option at this point. I have agreed to go and now we are just waiting to hear back from Dr. Fishman and see if he is willing to take on her case - at least for opinion's sake.
Our next appointment has been scheduled for May 20th with Dr. Johnson for a follow-up from her sclerotherapy and also with Dr. King who is an orthopedic oncologist and musculoskeletal surgeon. We will be meeting with both doctors at the same time. After Dr. King takes a look at Caitlyn and her history we will discuss the possibility of him performing Caitlyn's debulking surgery, but only if he feels comfortable taking on her case. If he does feel up to this challenge then I'm hoping I won't have to take Caitlyn to Boston. As much as I would love to travel there, taking an 18 month old that far away, by myself, is not going to be any easy task. But I would obviously do it if that was what Dr. Johnson and Dr. King felt was best for her. We will just have to wait and see.
I have to say, that it has been very nice this past month not having to worry about when her next appointment is going to be and trying to work everything around our trips to Milwaukee. We were able to breathe and just let Caitlyn live "normally" for a while. We have 20 more days until our next visit, so it will be like we could be some-what stress-free for two months. What a wonderful feeling. Now the summer is coming and I will be focusing on going back to work, after taking a year off to take care of Cait, and now her upcoming surgery(ies). I'm hoping to have these surgeries done this summer so I can start going back to school in the fall, full-time. This will be new for us so I'm not exactly sure how these surgeries will go, it seems to be a waiting game for the most part right now.
A few updates with Caitlyn's development:
On April 26th, Caitlyn took three whole unsupported steps right into my arms. With every step she just laughed and laughed! Then, just last night, Peter and I were able to get her to walk half-way across our living room and back again, all by herself! She was kind of half walking and half shuffling her way and sort of sidestepping it but she was doing it all on two feet - it won't be long now! I have also noticed that she has been quite fussy lately so this morning I decided to take a peek inside her mouth and noticed that she now has a total of 12 teeth - two of which are still coming through the gum line.
So thank you all for baring with me, I know it has been a long time since I have made an updated post available for you all. I try to tweet a few times a week that way you can stay in the loop of Caitlyn's daily accomplishments and activities. So be sure to check out the twitter feed on the left side of the page if you haven't done so already. I will post again soon, but right now it's time to take Caitlyn to the library. A perfect place to be on a rain Saturday afternoon!
Much love to all!!!
Just a couple of days after blogging in January Caitlyn and I were back at my local hospital. I took her in because she had been experiencing a horrible case of diarrhea lasting since her sclerotherapy procedure earlier in January. I had taken her to urgent care a few days before where they took some stool samples but those tests were all coming back negative. On this particular evening, the diarrhea was now accompanied with a fever, so to the ER we went. The ER doctor was going to send us home since her blood work and a urinalysis that they ran was coming back normal. Before we left he wanted to give her another dose of Ibuprofen since her fever was starting to go back up. Immediately after administering her the orange liquid Caitlyn proceeded to vomit it all back up. The doctor decided, and I agreed, it would be best just to keep her overnight for observation and see how she felt in the morning.
Throughout the night her fever started getting worse, reaching a max temp of 105. The nurse kept administering Tylenol in the form of a suppository which seemed to help but the fever just kept coming back and the diarrhea was still holding strong. I called down to Milwaukee to let Dr. Kelly (Caitlyn's oncologist) know what was happening. He said he did not want to transport her down so late at night, instead he would speak with Caitlyn's pediatrician in the morning and come up with a plan then.
The next day there was a lot of back and forth of the doctors trying to get a hold of each other. Finally, a plan was set for Caitlyn to be transported by ambulance from Eau Claire to Milwaukee. The transport had to be made soon because there was a major snow storm heading towards Milwaukee and it wouldn't be safe to drive once it hit. After waiting all day a new plan was made to transport me and Caitlyn by jet to Milwaukee. They figured the roads were just too bad to drive one and flying would be safer. It wasn't until 9:20pm when we were up in the air and on our way. Once to the Children's Hospital we were warmly welcomed onto the HOT Unit.
Since throughout the day, Cailtyn's fever had started to subside they hooked her up to some fluids, took some blood samples and stool cultures, and she was monitored for the night. Over the course of our two week stay, all stool samples and blood tests were coming back normal. Food was starting to, literally, pass right through her. She was put on complete stomach rest and was given a fluid through a PICC - which Dr. Johnson placed - called TPN. This had all of the nutrients she would need while her stomach was resting. While on the TPN her diarrhea started to subside and she was starting to act more and more like herself.
 | |
| Entertaining Caitlyn on the floor - the crib gets boring after a while |
A gastroenterologist, Dr. Noel, thought it would be worth it to do an upper and lower endoscopy. Come to find out, there is a possibility that Caitlyn may have Celiac disease. To be quite honest, I don't think she does. I have been feeding her a regular diet, without excluding gluten, and she has done just fine. Gaining weight and feeling great! Another upper endoscopy will be done towards autumn of this year and we will see what Dr. Noel finds then.
Even with the results that Caitlyn might have Celiac it still didn't explain the sudden horrendous bout of diarrhea lasting for four weeks. The assumption is that she caught a virus and had a hard time fighting it off and the end result was the diarrhea. She had a nasogastric tube put in place because the doctors didn't want to immediately start her back eating again once she was off the TPN. Instead, they started her on a Similac formula called Alimentum which was gradually increased as the days wore on.
Caitlyn was discharged home and left with the NG. After pulling it out about seven minutes after the nurses placed it in the first time, she had seemed to forget all about it; so I wasn't too concerned with taking her home with it still in place. Needless to say, the little stinker pulled it out just two days after being home.
Since then there she has been healthy and gaining weight with no signs of Celiac. We were back down in Milwaukee for Dr. Johnson to do another round of sclerotherapy at the end of March. This time, her procedure was actually filmed and I was interviewed. Caitlyn was a natural on camera! Caitlyn and I were again warmly welcomed by the nurses and doctors at Children's hospital and stayed the night for observation. She was discharged the following afternoon with no signs of any complications per usual.
Once she was discharged we headed on down to see Dr. Thometz (Caitlyn's orthopedists). While she was sedated for the sclerotherapy, occupational therapy came in and made a new brace for her to wear since she had completely outgrown the one that she has been wearing since September. The most recent xray of her hip showed it was "subluxing out" which meant that it was still in but it was starting to come out - at least that's what I understood from our visit with Dr. Thometz. Her hip socket is still pretty shallow and we are hoping that by keeping her in the brace during naps and at bedtime it will help fix itself. If not, then she may require another surgery down the road.
While we were there Dr. Johnson and I discussed the idea of taking Caitlyn to Boston to see a world famous doctor - Dr. Fishman. The purpose would be to get an opinion about Caitlyn undergoing a debulking surgery that would help take down the girth of her leg. Caitlyn's team of doctors were in agreeance and felt that Boston was an appropriate option at this point. I have agreed to go and now we are just waiting to hear back from Dr. Fishman and see if he is willing to take on her case - at least for opinion's sake.
Our next appointment has been scheduled for May 20th with Dr. Johnson for a follow-up from her sclerotherapy and also with Dr. King who is an orthopedic oncologist and musculoskeletal surgeon. We will be meeting with both doctors at the same time. After Dr. King takes a look at Caitlyn and her history we will discuss the possibility of him performing Caitlyn's debulking surgery, but only if he feels comfortable taking on her case. If he does feel up to this challenge then I'm hoping I won't have to take Caitlyn to Boston. As much as I would love to travel there, taking an 18 month old that far away, by myself, is not going to be any easy task. But I would obviously do it if that was what Dr. Johnson and Dr. King felt was best for her. We will just have to wait and see.
I have to say, that it has been very nice this past month not having to worry about when her next appointment is going to be and trying to work everything around our trips to Milwaukee. We were able to breathe and just let Caitlyn live "normally" for a while. We have 20 more days until our next visit, so it will be like we could be some-what stress-free for two months. What a wonderful feeling. Now the summer is coming and I will be focusing on going back to work, after taking a year off to take care of Cait, and now her upcoming surgery(ies). I'm hoping to have these surgeries done this summer so I can start going back to school in the fall, full-time. This will be new for us so I'm not exactly sure how these surgeries will go, it seems to be a waiting game for the most part right now.
A few updates with Caitlyn's development:
 |
| Caitlyn enjoying her first time at the park! |
So thank you all for baring with me, I know it has been a long time since I have made an updated post available for you all. I try to tweet a few times a week that way you can stay in the loop of Caitlyn's daily accomplishments and activities. So be sure to check out the twitter feed on the left side of the page if you haven't done so already. I will post again soon, but right now it's time to take Caitlyn to the library. A perfect place to be on a rain Saturday afternoon!
Much love to all!!!
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