Bone Density Scans

Kaitlyn had to go for Bone Density Scans today. We had concerns about Kaitlyn's calcium and dosage when we saw her neurologist back at the beginning of May and we are just now having scans done. They will be a good baseline look at before and after supplementation and we will learn if she has any issues with bone density currently. I'd be surprised if her bones weren't at least a little less dense than they should be given that she has no weight bearing at all and has never been given much more than the recommended calcium intake for a normal child her age. We have asked about standers several times in the past, but it always seems like she is needing any available funding for something more important at the same time.

Kaitlyn also had bloodwork done today. Her veins are getting easier to find it would seem. The last two times we have needed blood they got it after only two pokes both times! This is unheard of for Kaitlyn. We usually have had to do femoral pokes to get blood. It is nice to know that either she is getting easier to poke with age or that perhaps she has a little more muscle now. She is definitely much stronger now than she was a few months ago.

Kaitlyn's thrush also appears to have cleared up. It wasn't that bad to begin with, thank goodness. We will treat for a few more days with the Nystatin just to be sure. Besides Kaitlyn loves it. We apply it with a Q-tip and when she sees us coming with a syringe and a Q-tip she starts um-um and licking her lips. She seems to really love the taste(banana). Although Kaitlyn will eat anything if you give her the opportunity. She especially loves to steal your fork at supper and pretend to eat with it. She at one point would cry through every meal until we placed her in the middle of the Kitchen table to join us for supper. Now that we have her Easys stroller she can sit up to the table with us. She is still our little taste tester, sampling everything before we can eat it. We spend the whole meal eating and suctioning, it's turned into quite the process.

Thrush

Kaitlyn has thrush! I guess this explains her increase in secretions for the past couple of days. She's been really drooly and needing much more frequent suctioning than normal. We have never had thrush before. She has had yeasty problems with fingers and toes, the backs of her knees and around her G-tube site before but most of these problems cleared up entirely once we started Kaitlyn on Dairy-Free Acidophillus. I guess that we didn't up her dosage enough, or for long enough, while she was on all those antibiotics this last hospital stay. GRRR! I hate to see her have something that might have been avoided.

Anyway, we will try the Nystatin as that is what her pediatrician has suggested. It should do the trick, and I will put her back on her higher dose of acidophillus until it clears. She has had a bit of a rash around her hairline and her face the last few days also but I didn't think of yeast until I saw the thrush. She only has a couple of small spots of thrush on the back of the right side of her tongue. Hopefully it will clear up in a few days.

Wheelchair Trial and Stitches

We had to take Kaitlyn to the hospital today to have some stitches checked. Her recent surgery was all done laporascopically(so there were no stitches in the skin) and yet there were stitches poking out of two of her laporascopic sites. The sites have all healed very nicely and the stitches aren't causing any trouble we just thought that they should be checked as we weren't told that this was something that we might see. The surgery resident said that they were internal stitches poking out and that they were dissolvable and shouldn't cause any problems. He told us that we could go ahead and trim them off or flush to the skin and the rest would dissolve on the inside.

Kaitlyn had another wheelchair trial today. She did well again today, but the trial was sort of a waste of time because the modifications they were supposed to make didn't get done. We scheduled the appointment earlier in the day this time because last time Kaitlyn fell asleep in the chair! Today she was still really tired. We aren't really sure why she is so tired, perhaps she is still getting over her surgery. And she is really just tired as her sats have not been affected and no other symptoms.

The venting is going much better. We had to make some very minor changes to her diet. We now feed her more of her fruits and veggies through the day and just juices and vivonex through the night(as this combination is thinner). She seems to vent better when the fluid she is getting is thinner as well as when the rates are slower. We have been contemplating doing some bolus feeds through the day instead of continuously 20 hours a day. We still aren't sure really how to go about this. And we hate to change things too much when she is doing so well. Her secretions are a little thicker these days, but that is probably due to her colonized pseudomonas. We give her as much fluid 20 hours a day as we can plus bolus water for flushes, so she is getting plenty.

Powerchair

Kaitlyn has had her first try with a power chair today. She tried a quantum base with a mini joystick. She totally got that the joystick moved the chair. The seating people were surprised that she got the fact that the joystick would move the chair. They thought that a successful day would end with her sitting in the chair and not fussing over them trying to adjust different things. She couldn't get a good grasp on the joystick as they had it attached to a gooseneck and the position wasn't quite right. But still a very good first try. We will try again in two weeks to allow the seating specialists a chance to make some changes.

Ultrasound and Max Easys

We had Kaitlyn in today for an ultrasound of her legs to see if the clots are resolving. So far the Enoxaparin seems to be working. There is some change in the clotting in both her legs. We are leaving the dosage the same for now and will hope for the best. We will repeat the ultrasound in a few weeks to see if the clots are completely gone. When the clots are resolved we should be able to stop the Enoxaparin injections. Then we have to have blood work and follow up to see if Kaitlyn has some predisposition to clotting (other than not moving and poor muscle tone).

Kaitlyn finally got her Max Easys Stroller. What a fantastic stroller. We just love it and so does Kaitlyn. She can finally sit up supported and she is loving it! We were hoping that the cough-assist would drop onto the vent tray easier, but at least it does fit and we can now go places with our daughter. When we turn Kaitlyn's seat around to face us the cough-assist will drop onto the smaller of the two trays and we have added a support to that tray to manage the weight. Kaitlyn prefers to sit facing out, but for shorter trips she will have to make do.

Home Again

Kaitlyn made it home today! We spent the last week getting feeds restarted, struggling with venting Kaitlyn's stomach and dealing with clots in both of Kaitlyn's legs! We didn't have any trouble restarting Kaitlyn's feeds, she has tolerated feeds and rates extremely well. I attribute this to her Vivonex(AA Diet). We have been having some trouble with air in her tummy. We have not had any experience with venting her stomach while feeding at the same time. Thanks to all the help we received from other families with SMA children, we now have some idea as to what we are doing. Right now I have to get up and manually vent Kaitlyn's stomach several times a night. We have her extension attached to a sixty cc syringe hanging above her, but at full feeds she seems to trap air in her tummy. I am hoping that this will get a little better over the next little while.

When Kaitlyn's proximal lumin in her central line started leaking and we couldn't get blood back through the line, I asked during rounds if we shouldn't be checking that leg for clots as we already know that she has a clot in her right leg. They did an ultrasound and sure enough another clot! Now both legs have clots. Because the clot in Kaitlyn's right leg was an old clot and collaterals had already formed, her doctors had already decided not to treat the clot. The clot and collaterals have left the right leg inaccessable for future lines! Since the clot in Kaitlyn's left leg was new her doctors have decided it would be best to treat it. We are trying to also preserve this site for future central lines.

Kaitlyn has been placed on Enoxaparin subcutaneous injections for a three month course, to be reassessed often. Yet another thing my poor girl has to endure, but it's for the best.