September 16, 2004
As I look at the calendar, I realize that it has been six weeks since I last wrote an update to share Ivy's progress. Not good at all...I have to do better. The support from all of you has been so incredible and it is so important to Ivy and us all that I MUST make sure to keep everyone as up to date as is possible.
We have continued on the roller coaster ride of ups and downs with Ivy's progress, with some good weeks where we seem to be making steady progress and others where we are dropping back to very difficult situations. In the last two weeks we have gone from delivered oxygen levels at 50% to where they had to be set at 90% in order to allow her to breathe at all. We are now back to 65% and somewhat stable...for the moment.
This latest excursion seems to be related to control of fluids and Ivy's ability to keep them in the blood stream. Because her lungs are still so fragile, the balance of fluid is very critical and very difficult to control. In order to allow Ivy's kidneys to “come back”, the fluid levels and her ability to oxygenate blood need to be high enough that they can function. But her lungs cannot tolerate the elevated fluid levels and still oxygenate, so we are in a constant struggle.
Because of these oxygenation issues, the pulmonary doctors have had to raise the pressure support (originally to 25, now finally reduced to 22) and return to a PEEP setting (3.5) to hold the alveoli open. This creates a situation where the fistulas and her chest tube (the last one remaining) cannot heal because the pressure keeps them open. As long as Ivy's pressure support remains high, the fistulas will not heal. This is especially concerning because of the potential for more infection(s).
The infectious diseases doctors have been staying on top of things, but this can change in a moments notice. Ivy's WBC's (White Blood Cell) have been staying around the 20's which is much better than in the past, but still a constant concern. The fact that we are not seeing wild swings in the numbers is somewhat encouraging.
Our newest issue is that Ivy has developed blood clots in her left arm. This was discovered during an ultrasound scan of Ivy's arms and legs. The doctor told Kathie that he wanted to scan her legs. Kathie told him Ivy's left arm looked “bigger” and asked that the arms be scanned as well. Thank God she suggested it and the doctor listened!
This clotting issue is causing the problems I posted about with the CRRT (dialysis machine) and clogging the filters. Each time the filter clogs, Ivy loses the blood that is in the filter. She is being transfused with blood today because of this. The clots are also troubling because they could dislodge and become fatal for Ivy if they were to enter the lungs.
The present plan is to take Ivy to surgery tomorrow and put in a new catheter. Once that is done, they want to insert a PICC line in the left arm that will allow them to try to dissolve the clots. I can't begin to tell you how much the thought of this scares me. It was only a few months ago that the present catheter was put in and that procedure was terrifying enough. They want me to sign the consent forms tonight and I’m not convinced I can as of yet.
I am waiting to hear from the doctor so that I can go over everything with him and to fully understand the benefit versus risk involved. He was telling us over the weekend that he recommended the procedure, but he wanted to wait to address the issue due to fevers. Because of the issues this morning with the CRRT, the doctors feel that the surgery should happen as soon as possible because they feel the clot is breaking up and needs to be dealt with before it clots off the present catheter completely.
At the very best, tomorrow will be a very stress filled day!
There is some positive news I can share. Ivy is now eating on her own! She is no longer fed via a NG tube and is doing very well eating “real” food. I can’t tell you how rewarding it is to see Ivy eating once again! The big concern is making sure she meets her nutritional goals on her vegetarian diet. This is problematic at times because the hospital is not well prepared to handle her diet. Kathie has taken on the responsibility for her feeding, which is an enormous task.
The doctors helped us to get a refrigerator for Ivy’s room (we were using a cooler, but this isn’t very good for keeping things fresh). The hospital is working to come up with menu items that Ivy can eat, but I don’t think they really understand Ivy’s situation and commitment to her vegetarianism.
Ivy’s nutrition is key to her lungs and body healing. There are protein and caloric demands to be met everyday that requires Ivy to eat a lot more than she ate in the past. This is difficult for both Ivy and Kathie as she needs to eat a lot of food to keep up these levels and her stomach has shrunk in size from a constant liquid diet given over many hours time.
Chewing is difficult for Ivy because her jaw is broken and displaced. A dentist came in last week to review Ivy’s jaw to see if a splint could help relax the muscles in her jaw making eating a bit easier. Again, it was Kathie who thought to have this done in order to help Ivy. Last week we got word that the young lady I told you about in the last update was being released to rehab. In six weeks time, because of all they learned from Ivy’s case, they were able to “fix” this young lady and get her on the way to being home once again. Kathie (at Ivy’s request) went to see her before she was released to wish her well and to let her know that Ivy sent her best wishes.
We are hopeful that she will come and visit Ivy when she has recovered a bit more. She will probably never know just how much of quick recovery was due to the lessons the doctors have learned dealing with Ivy. While we all wish the young lady only the best, we can’t help but be a little jealous of her recovery and release from the CCU.
Ivy’s bedsores are both continuing to heal very well. This is a direct result of Kathie’s efforts to see that Ivy’s dietary needs are met and the constant turning to keep the pressure points that create sores from happening. We are quickly approaching the point where Ivy will not need a dressing for the sore on her bottom at all. The head wound is also healing nicely, but will require a lot more time.
As a bit of a side note, we have a new site that is being set up. For now, the two sites are linked together (the one at the reef will probably be linked to the new one) and as I can (with the help of some very dear friends) I will get the new site set up to handle everything. The new address is: www.thebookofivy.com . Please stop by and say hello. You can also e-mail me at the website at email@example.com.
Please take a moment to remember Ivy in your prayers, especially tonight in light of what is planned for tomorrow. Even though I have been terrible about the updates and maintaining the website, please know that your thoughts, prayers and words of encouragement mean the world to us all. The support you have given us all has been tremendous. We all take comfort in knowing that so many people around the world care about our dear Ivy….God bless you all!
With our best wishes Always,
Michael, Kathie, Chris and most especially, Ivy