New Year!

Well this year started out much better than last.

Lets talk about last year. Last year we spent the New Year in hospital. Kaitlyn was having some serious digestive issues. Last January Kaitlyn had a G-J tube. This was a fantastic option for us. However, last January when I would begin her J-tube feeds after a brief fast about twenty minutes later it would start pouring out her G-tube. I can't even begin to tell you how wrong this is, thins should never move backwards through the gut! After a couple of hospital stays for digestive issues, we decided to switch her formula. We put Kaitlyn on an Amino Acid diet, Pediatric Vivonex. This has proven to be one of the most significant things we have done in caring for our daughter.

In May Kaitlyn had been having some issues with increased secretions, over and above her normal range. We put her on an antibiotic when we noticed a slight change in the color of those secretions. We were hoping to avoid any bacterial infection, secondary to whatever it was she had virally. About a week later she still had the secretions and the color was getting more and more green. Then we had a cold go through the house and one day Kaitlyn was fine and the next she was very ill. We ended up in PICU with a very sick little girl. She had caught our cold and we then found out that she also had a bad case of pseudomonas!! Pseudomonas is a particularly nasty bacterium that loves living in the lungs, but can also colonize other areas of the body as well. Kaitlyn had pseudomonas in her lungs, urine, and her g-tube stoma.

She narrowly avoided intubation, but we were able to avoid it by following Dr. Bach's NIV Protocols. We were also able to show our hospital how this protocol works. A very nice feeling to say told you so to the experts! They needed to see this protocol in action! We also taught them a thing or two about using the cough-assist, including bleeding O2 through the cough-assist while coughing to reduce stress on the patient. Another patient (paralysis) in the PICU benefited from this knowledge while we were there! Some hefty antibiotics and two weeks later we went home.

At the end of July Kaitlyn's J-tube blocked. We had to go to emergency to try to get Kaitlyn's J-tube replaced. This is supposed to be a simple take out the old tube and insert a new. It needs to be done in radiography under fluoroscopy and takes about twenty minutes! Well we got to the hospital around 1:30pm and they managed to delay EVERYTHING! It is part of Kaitlyn's emergency protocol at the hospital that they are not to withhold nutrition!!! They couldn't place the J-tube that day (still not sure about that one!). The general surgeon placing the central line couldn't get the femoral vein in Kaitlyn's right leg. They had to call an intensivist down to place a central line in her left groin. By the time that this was all done it was too late to order TPN....GRRRR! That's why we said order it when we first arrived! We had no way to feed our daughter! She would have to fast until TPN could be ordered up the next day. They promised to have a J-tube into her before she would need the TPN. We said order it ANYWAY!

That night Kaitlyn's right leg got really cold, and there were no pulses. Her nurse didn't notice, I DID! They scheduled us for early morning ultrasound, before the J-tube placement so that once the J-tube was placed we could go home! We found out the next morning that Kaitlyn had pretty severe blood clotting in her right leg. Both veinous and arterial clots. There were extensive collaterals formed, so this clotting was believed to be from the central line needed back in May. We then went to Radiography for the new J-tube.

In placing the new tube the radiographer lacerated and perforated Kaitlyn's bowel. He somehow managed to make a gash in her intestine and then poke the j-tube out through the intestine wall!! Kaitlyn had to go for immediate emergency surgery. I literally had only a few minutes to process all of this and make some pretty important decisions for my daughter's well being. Our general surgeon came up to see Kaitlyn and I before surgery. He explained what had happened and what he was going to have to do to repair the damage done. He then told me that we were going to have to consider another way to feed our daughter!!! This I was not expecting! He said that once the bowel has had this type of extensive damage that we would never want to push a tube down through the bowel ever again. We had two options; place a fixed J-tube or perform a nissen/fundiplocation.

The first thing I did was call Tim. He was at home taking care of the boys. I had to tell him over the phone what had happened. He thought that it would be several hours before the surgery would be ready to take her. I told him that they were taking her in twenty minutes and that we needed to make a decision NOW! What a thing to have to tell him when he's at home, no way to get in to see Kaitlyn, and no time to think on it! Thankfully I like research and had read quite a bit about both procedures (just in case- always trying to think ahead). I knew the pro's and con's about both procedures. I told Tim what I thought and what our surgeon had said in answer to some of my questions about both and we decided to go with the nissen/fundiplocation. The surgeries were to be attempted laporiscopically so as to avoid unnecessary pain and healing time!

Seven hours later our daughter pulled through. 36 hours later she was off the vent. In a few days she was back home and we are so glad to have her nissen. This is NEVER the way that I would have chosen to have had it done, but something I wish we had had done LONG ago! She has been so much healthier since the nissen. We discovered another clot, this time in Kaitlyn's left leg, as a result of the central line from this stay. We decided to treat the clots. She had to go home with twice a day subcutaneous injections, which we were able to stop early December.

This fall and winter so far have been really good. Other than head colds that keep going through the house. We have had two aspirations since September. These aspirations were due to secretions and happened at night while we were trying to get some sleep. But we have managed everything at home.

We are hopeful that the year 2009 will be a much better year for us. We are much better prepared to care for Kaitlyn at home this year and have learned so much from 2008! We also have much more confidence in our hospital to be able to help us should we need them. They have also come a long way. There is new research and hopeful trials being started this year. The most hopeful thing by far is the Stem Cell research ongoing.

We are thinking of all the sick children this New Year and hope that they make it home with their families very soon.