Parker's airway is still swollen, so no attempt was made yesterday to remove the ventillator. His oxygen level was reduced further and he remains stable. Jason and Jen met with a family advocate who is helping them deal with the possibility of bringing home and caring for a critically ill child. It must have been good for them as Jason sounded better last night than he has for some time.
The next step is to put in a permanent IV (shunt?)so that Jen and Jason can manage his medication at home. I'm guessing it's something like the insulin pump used by diabetics. Since he needs to be sedated and on the ventillator for that procedure, they are going ahead with that now (today?).
It's obvious that this little guy is a fighter--Craig says it's because he's a Romney (swimming up stream).
PARKER & AUNT AMY
HAPPY BIRTHDAY PARKER--April 30th
What a celebration this is!!
Smiles!!
Day after ventillator was removed.
Sunday, April 27, 2008
In ICU on ventillator
Parker at Brenner Children's Hospital
3 comments:
I just wanted to leave a quick comment because reading the blog really touched my heart. I know how hard it can be to have a critically ill child. As most of you know, my daughter Ashlyn , who is now 7, was very ill for some time after birth. She is mostly recovered from her major health issues, but because she has Down Syndrome it will be a constant battle to keep her out of the hospital. We have undergone many of the same tests and procedures that you have. We have had swallow study after swallow study and had 2heart caths. I have also experimented with every food thickener, bottle/nipple type, and finally we just had to have a NG tube placed and finally a G-tube placed so that I could get her to eat. I am still dealing with this issue today.
Although Ashlyn's problems are very diffent from Parker's, I truley can relate. I know how hard it is to get up every morning and have to go to the hospital. On occation, I just slept there, I needed to be close to her, to let her know I was there. My ex-husband would work a full day and then relieve me at the hospital for a few hours so I could take a breath. It takes a great toll on your mental health and your emotions. When she was able to come home, it was still a test to monitor her and make sure that all the tubes and pumps and monitors were working properly. Thank goodness for home care nurses! At times I feel like I have enough "on the job training" to become a nurse!
It is so hard to see your child with tubes and IV's and only be able to hold his hand. Everyday I would long to have the opportunity just to hold Ashlyn. I know that children are resilient. Even though they are small, they are much stronger than you or I. Maybe that is because they are so close to the Lord.
I would advise you to take everyday as it comes. Try not to look at the big picture. It is easier to deal with that way. Do not let these circumstances overwhelm you. Please remember that your child can sense your emotions. When you are stressed, he will become stressed. Also remember that you are a family, for time and all eternity. Do not let these hard times tear you apart. Parker knows that you love him very much, and that will give him strength!
Please keep up the blog. If you ever need to chat, you can call me at anytime. Sometimes I found it easier to talk to someone who has been through a similar situation as I was dealing with. You are not alone! My thoughts and prayers are with you always!
Cousin Erin
Erin: Thanks so much for sharing your feelings and experiences. I hope someday we can meet your little angel, Ashlyn. Love, Aunt Barbara
You know, Erin, it's amazing how familiar your story sounds. It is nice to hear from someone who truly understands what we are going through. We truly feel the prayers and support from everyone strengthening us. We still don't know what's going to happen but we've realized that all we can do at this point is pray for strength and understanding and for the Lord to prepare us for whatever happens. We are learning that your advice is true to take things one day at a time and not get too bogged down with concern for the long term implications of all this. We are learning to rejoice in simple successes. One of the nurse's here was wearing a shirt the other day that said something like:
"At the end of the day, the mere fact that we are able to keep standing is reason enough to celebrate."
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