Tuesday, April 28, 2015

Caring For Claibonre

As you all know Claiborne has been in and out of the hospital since November and we are still fighting to understand what is going on with her sweet little body. During our last 9 day stay a few weeks ago Mack and I were starting to contemplate how we were going to pay the mounding medical bills. We are both not great at asking for help, while we both have worked hard to provide a nice life for Hudson and Claiborne we were in noway prepared for this. I was laid off shortly after Claiborne's g tube surgery in February and cannot go back to work at this point due to all the appointments and therapies that Claiborne has.

While sitting in the hospital I got the nicest email from two friends who wanted to help. Ashley and I went to high school and college together and I met her sister in law Jen several years ago through one of my best friends. Jen began selling Arbonne and then so did Ashley, through Arbonne they have setup an online fundraiser to help us with our medical bills! These ladies have earned gold stars in my book!



Checkout the products and if you have questions about how the fundraising works please feel free to ask Jen and Ashley.

Friday, April 10, 2015

9 Days and a New Tube Later

If you follow me on Instagram and Facebook you know that Claiborne just spent 9 days in the hospital for what started out as a GI bug.  There were ups and downs and just when we thought we were going home we ended up staying longer than anyone expected.

It all started 2 Thursdays ago, just a reminder that b/c of her surgery she cannot throw up, Claiborne began having diarrhea in the morning that continued throughout the day. We went to the pediatrician but she seemed to check out okay. The next day she was still the same so when our nurse came she and I called the doctor together. We decided to lay off on her feeds and try pedialyte after a few hours, if she still could not handle that we were most likely going to be sent to the ER. Well she couldn't handle the pedialyte so as soon as I grabbed Hudson off the bus I dropped him off at a friends and headed to the ER.

Of course when we go there she no longer had her 102 fever and was just as pleasant as can be ;) She had an xray which showed a ton of gas in her belly that was having a hard time moving out even with venting (how a tubie releases gas), they tried giving her a very small dose of pedialyte and she immediately had diarrhea so it was up to the 6th floor we went.

Mack and I have become very fond of the 6th floor nurses and they all love Claiborne. As much as we hate being admitted it is very comforting when the nurses are familiar with not only us but Claiborne as well. Since C was considered contagious we were able to have a private room which meant we could bring the air mattress (it's the little things people)!

The only thing C was getting at this point was IV fluids, the goal was to let her body rest and then slowly start with pedialyte and move up to full strength formula at her normal rate of 55mL an hour. Saturday was by far the worst day, she had now not had any food for over 24 hours and boy did she let us know her displeasure. She screamed inconsolably for 9 hours! They tried tylenol and motrin to no avail. It was a cry I never wish to hear again, a mix of pain, anger, hunger, and tiredness. They finally gave her some morphine and she settled down. By Sunday night we had moved to half strength formula at a rate of 25mL and we increased by 10mL every 4 hours. When she got close to 55 she began retching....think dry heaving but 10x worse.

They immediately stopped feeding her to let her body rest. At this point we were all just thinking that she was still fighting the GI bug and her body needed some more time to rest. Sunday night we started the feeds again and she again seemed to do fine. Monday when we moved to full strength she was ok until we got to 50mL and then she started retching again, this time it scared me so badly that I yanked the emergency cord out of the wall! Food is stopped again and now we are told that no matter what we will not be sent home until she can tolerate her full feed. The next step was a change in her formula since C had recently become allergic to all foods to see if maybe somehow she had developed an allergy to alimentum. So we tried the Elecare and once again as soon as we got close to 50 she began retching.

At this point I have to admit I was starting to lose my mind a little bit, I just wanted to know why my baby couldn't "eat." They sent C to have another upper GI done to see if maybe her Nissen had slipped, poor girl is so used to getting a bottle when she sees the radiology ladies that she was super disappointed when they put the barium through her tube. They did not see anything on the upper GI that would be causing her to retch, she also retched after the barium...yuck!

Her GI prepared us to maybe switch her from a g tube to a gj tube, this would be a last resort in order to keep her nourished. She was receiving formula at a rate of 20mL per hour at this point which is not enough nourishment or calories for a baby her age, so this became our primary concern. Thursday she had an MRI of her brain to see if maybe there was something going on that could shed some light on her overall situation ( we had already been in talks with her neurologist about doing the MRI so we just decided that since she was already in the hospital & had to be sedated we should go ahead and do it.)

Friday we went ahead and switched her from the g tube to the gj tube, which again required her to be sedated. The gj tube goes past her stomach and into her intestines, completely bypassing her stomach. The conclusion was that her stomach was having a hard time emptying the way it should after the bug, so we are giving it a chance to rest. In 3 months when it is time to change the gj tube we might put the g tube back in....

They didn't waste anytime getting her up to her goal and thank goodness she tolerated it like a champ and we got to go home Saturday afternoon. We had a follow up on Monday with GI, while there I ran into the neurologist and she ran down to her office to read the MRI for me, while Claiborne does have some swelling in her head it is not affecting any part of her brain. She most likely will not have any issues other than maybe a slightly larger head.

Our next steps are to see the allergist who we had to cancel on due to C being sick and we have made an appointment to see a pediatric geneticist. We are unsure if we are going to test her for the broad gambit of genetic disorders because frankly we might not be able to do anything about what we find out, for example we could find out that she carries the alzheimer gene or the breast cancer gene, I am not sure I want to know that information at this stage in her life or mine. If the doctor thinks she has xy or z then yes we most likely will test for specific disorders but it will not be right away and we will undergo counseling both before and after. This is a highly personal decision, one that we do not take lightly and we feel we must arm ourselves with the proper knowledge of genetic testing before just diving in.

Claiborne has been such a trooper throughout all of this and so has Hudson. He has rolled with the uncertainty well and is such a loving big brother. I could not ask for better children.

Follow this blog with bloglovin

Follow on Bloglovin