PICU again!

John was admitted to University Columbia on Tuesday evening for a fever. 38.4 at home and then 38.9 by the time that we made it to the ER. Of course it is yet another line infection - this time sepsis. During Tuesday night he went from 38.9 to 34.1 and exhibited other shock symptoms like extremely low blood pressure. Very scary but he remained on the floor. Wednesday morning he was looking better and continued to improve slowly through the day but by Wednesday afternoon it was decided that he should be moved to the PICU for closer observation. A move that we were happy to see.

The PICU here has some definite advantages over the PICU in St. Louis, one of them being that we can use cell phones in the room, bring food into the room and one of us can sleep in the room. Which worked out well being as John slept half the night with me. His stomach is very very gassy and he is upset by it. It’s the first time that I’ve ever seen a farrell valve pouched out. This morning he looks really puffy to me. I’m waiting for when he is awake and in a good mood to see if that is just me, or if he really looks puffy. Of course they gave him a little lasix last night and now are chasing fluids, but that is just par for the course.

St. Louis. Well they want him stable and there now. Of course. Mark called yesterday to see if he could talk to Dr. Hanna himself, of course not. Sandy called back and said that they want him stable and moved. The doctor here said that if they want him and she thinks that he is ready to travel that is fine but they will fly him. For that I was glad. At this point I don’t know. His specialists are in St. Louis but the docs and the care that he is receiving here has been nothing short of excellent so we are willing to let them work it out amongst themselves. I always feel guilty that we leave here and go there - not that we are really doing something wrong, but these are excellent docs too. I just never want them to think that we leave because we think that there is something wrong with them. It’s just that well even if it wasn’t for the docs St. Louis has Sharon, John’s favorite nurses and PCA’s and such. Of course we had Ashley first thing here, we always have her here and we like her very much. I don’t know I always feel torn because both hospitals are so good and maybe I should just focus on how blessed we are to have two such good places for John to be.

This sepsis looks like it might not get as scary as the last one. Of course that didn’t stop mom from being upset because in her opinion we should have had surgery done and now. I don’t think she understands that at this point, at least at the last time that we visited this discussion the risks of surgery outweighed the possible benefits especially with John showing adaptability like he was. I figure that once we get to St. Louis we will be there for the long haul as they will want to work on feeding stuff again. That’s fine, this time we prepared there is at least a months worth of stuff packed in the Jeep ready to go today if need be. Maybe that will be the ticket to keep us here for a few more days and then home. Doubt it!

The adoption was finalized on Monday but of course we don’t have the paperwork to prove it so John is still Craft on everything. If we do our normal month in the hospital though we will get to change all that probably first of next week. Jen sent flowers and balloons, she is wonderful. Everyone sent their congrats via email and it is so wonderful to have it all done.

Officially Done

Our lawyer called this afternoon to let us know that John is now officially John Allen Hass - his adoption was completed today!!!

Health wise he is doing pretty good, making little baby steps each day. For now he is lounging in his chair playing with his rings and throwing things on the floor as he tires of them!

Thanks for all your prayers and well wishes along the way - it's so nice that today he is finally officially ours!

In Christ's Love, Mark, Gina and John

Officially Done

Our lawyer called this afternoon to let us know that John is now officially John Allen Hass - his adoption was completed today!!!

Health wise he is doing pretty good, making little baby steps each day. For now he is lounging in his chair playing with his rings and throwing things on the floor as he tires of them!

Thanks for all your prayers and well wishes along the way - it's so nice that today he is finally officially ours!

In Christ's Love, Mark, Gina and John

The Long Good Friday

John's snarky nose was worse this morning when he got up and he had started to run a fever too. He did play, smile and carry on until about the time that Desiree, his occupational therapist, came and then he was starting to feel worse again, the tylenol was wearing off. He did cooperate with her a little bit, she is a sweet lady who knew that he wasn't feeling too well so instead of pushing him too hard she cuddled and visited with him and he rewarded her care and concern with some smiles and 'sweet talk.' She is coming back on Tuesday, we are hoping that he is up to a little more work then, but thankful for even his good humor today.

When our little sweetie got up from his nap his fever was 38.4 C and so we called the pediatrician and his advice was to take him to the ER. Not very often do we go to the ER and come home without hospitalizaton but today was one of those blessed days. John and I stayed at the ER while Mark went to St. Paul's, the country parish, for the Good Friday Tenebrae service. While he was gone we found out that John didn't have RSV, the flu or strep - HOORAY! All his labs and x-rays look like an upper respiratory infection and so we are home for lots of fluids, rest and some tylenol and motrin to alleviate the symptoms.

Even after all the long day of it, he was smiling and playing before we put him to bed. We've not seen him this easy to make smile while he was sick and so have high hopes of it passing soon. He's doing well and even holding his own hydration wise. One more night we are thankful that our precious pumpkin is sleeping in his own bed and for this night we pray that he feels better and stronger tomorrow.

Easter Friday

Jesus Christ is risen! He is risen indeed! Alleluia! Alleluia! Alleluia!

Mare is here and we're waiting for final word on going home. John's labs looked great this morning. Dr. Hanna is on board that we can go home, just waiting on Dr. Rothbaum's okay.

Therapy went well this morning. Christine, PT, and Emily, OT, worked with John for a while then Jane, ST, came in and he actually talked to her a bit. Kelly the student nurse hung out with us and blew bubbles, John of course hollered and complained but worked through all of it.

Emily commended us on our healthy attitude about John and his need for independence. I can't imagine wanting anything else for someone that I love so much.

In the conversation with Dr. Hanna this morning I offered to do vitals and all kinds of stuff and he told me that he didn't want us to feel like we were running a hospital out of our home. I told him that I'd rather try to run a hospital out of my home than try to run my home out of the hospital. He told me that when he is training his fellows in the future he will remember this quote from a wise mom. He has also complemented us on several other things and told John that he was very blessed. It feels good to be appreciated for how we love John and take care of him - please God help us to keep taking such good care of John.

Jesus Christ is risen! He is risen indeed! Alleluia! Alleluia! Alleluia!