Its been better... Its been worse

Yesterday Kenzie progressed in feeding with the volume they were giving to her. Instead of just dipping the Nuk brush in the carrots they now take a spoon, put the food on the spoon, level the spoon off and then take the food off the spoon with the nuk and give her that amount in her mouth using the nuk. They say that using the nuk helps take some work off kenzies plate. The nuk being pushed down on kenzies tongue helps facilitate her swallow (and maybe a gag sometimes too the way I see it). Kenzie is doing pretty well with the greater volume. She is having a little more vomiting but she isn’t refusing and is still enjoying her mealtimes. Today they changed things up even a bit more by giving kenzie pears. Previously we had only worked with carrots. Kenzie definitely made a face (almost like a sour face) everytime the pears touched her lips and had a few more spitups than normally but she didn’t refuse anything and did pretty well with them.

Medically Kenzie needs blood drawn for a variety of tests. For anyone who has followed Kenzie through her life knows that is a constant struggle. For some reason Kenzies veins are so easy to see but virtually impossible to get blood out of. They need like 17mls which is a little over half an ounce. Usually we struggle to get 2 mls (just to put it in perspective). We need the blood for immunology (Kenzie gets infusions of immunoglobins once a week because she has a weakened immune system), regular labs to test her protein level, and a few mls to test for a rare genetic disorder that a doctor in san diego just discovered. Yesterday a nurse who was supposedly a good stick tried for 40 minutes, finally got 1.5 ml and then it clotted (which means we couldn’t use it). Today we sat for another 30 minutes sticking her again and got about 4 which takes care of the immunological stuff but nothing else. I’m sure I don’t have to explain to you how Kenzie is when they take blood but shes done it so much that all she has to do is see the torniquit and she starts screaming. The screaming then turns to screaming and vomiting which then gets her all worked up and nothing we do can stop it till they are done. Its really sad. Now we have to make a decision on how we are going to get the rest. I am opting for an arterial stick (which means they go directly into the artery instead of a vein). The blood will come out much faster and we should be able to get what we need. The downside is that artieral sticks are painful. Personally I think some pain is better than the psychological torture of spending a half hour 3 days in a row being held down and stuck over and over while the blood barely comes out. I guess the final decision will be made later. To top the day off, Kenzie will be getting a Pneumococcal Vaccine. Some of you might ask us “but I thought kenzie cant get any vaccines while she gets IGG infusions I thought?” Well youre right. We are stopping her infusions for 4 weeks (which makes me VERY nervous) so she can get this one vaccine. They feel that her chances of getting pneumonia are greater than the risks of not getting her infusions for 4 weeks. We spoke to her immunologist in NY to make sure he was comfortable with this decision before we went along. So even though for 6 months we gave kenzie shots twice a day… I still hate it for her and feel badly that she doesn’t know this is coming later and that tomorrow shell probably get the arterial stick.

To complicate matters even worse, the GI doctor here just came and spoke with me about switching Kenzies GTube (the tube in her belly) to a GJ Tube. The GJ tube has 1 portion that goes directly into her stomach (the G part) and 1 portion that leads the food straight to the small intestine (the J portion). When food is delivered into the J portion, or the small intestine it makes it very difficult, if not impossible to vomit. They feel that she vomits too easily both behaviorally and medically and that eliminating the possibility of vomiting will make her progress in the feeding program much more significant. GJ Tubes are something Jordan and I have discussed multiple times over the last year. It has pros and cons. The pro of course is really only 1 thing: no vomiting. The cons are: It is a surgery to insert and will require intubation and general anesthesia. It sometimes breaks or dislodges and then requires another surgery. You cannot bolus feed through a J tube, which means she will have to remain on continuous feedings when fed through that tube. Continuous feeds are a problem because Kenzie now moves all over and I need to follow her everywhere with either her backpack or IV pole since she can’t do it herself. The J tube also requires a lot of maintenance. It needs to be flushed every 2 – 3 hours round the clock. That’s not so bad while we are here and have nurses that can help, but for me at home it just makes things way more difficult once again. So… Jordan will talk to the GI hopefully tonight and the two of us will have to make a decision.

Speech and Occupational Therapies went a bit better today but still she is not responding well with them. She tends to cry a lot. Without getting through to Kenzie during these, we will not be able to ever progress her food texture or get her to drink. I have tried to talk to her team about switching the locations of the therapies to her feeding room (she seems to like the feeding room a lot), or putting her in the same booster seat she uses but I don’t know if they will allow it.

Tomorrow is a big day as we have our steering meeting in the morning. The steering meeting will be where the whole team meets with us (Jordan via conference) and tells us their goals for kenzies time here. We also intend on letting them know our goals as well. I’ll let you know how that goes. Today and yesterday have basically sucked not having Jordan around to be apart of these conversations and to be here with me for the rough times but luckily he will be here Friday for a whole week. Ill try and update tomorrow again… the internet keeps going down here! Sorry for the long post.