Friday, September 28, 2007

September 28th


Historically Thursday's and Friday's have presented themselves with bumps in the road for Jack. Each weekend we seem to be experiencing the same things over and over. This week was no exception. He started to take some baby steps forward and ended the week taking a couple of big steps in the opposite direction. Ideally, the physicians would like to see Jack's urine output around two or three ml's per hour. Yesterday he put out 9 ml's the whole day. Consequently Jack does not look like our little baby anymore. He has cauliflower ears and his eyes are swollen shut. All he needs is a singlet and we can throw him in the squared circle. Like I've said before, he is a fighter. They started him back on nitric oxide to help the pulmonary hypertension. He is also on another set of diuretics. His blood pressure has started to sag again probably because he is so dry intravascularly. They are choosing not to give him more fluid to increase the blood pressure because whatever fluid they do give him leaks back into the tissue. He is dealing with two problems that kind of work against each other that really make it difficult for the doctors to treat. The fluid helps to maintain his blood pressure and since Jack can't keep the fluid in his circulatory system it causes him to get more swollen. In essence he has plenty of fluid it is just in the wrong spot. Basically they are sacrificing the lower blood pressure in hopes that his kidneys will start doing their job without a higher blood pressure. On the bright side his heart function looks good and is improving. With the surgery Jack has undergone at such a young age we try not to be surprised that he is having a hard time bouncing back. Today we made the realization that from day one his body didn't get a chance to do normal body things. The first five days he was without much for his kidneys to process, then spent a day on bypass. It is no wonder that he is having a hard time doing the normal baby stuff. We are grateful he is being watched so closely and that he still gets mad when he is bothered by something. Sarah was lucky and got to hold him while they changed his bedding today. I know he couldn't have been blessed with a better mommy. She is doing such a good job.

10 comments:

Janette said...

Your son is amazing! You guys are amazing parents! And I can't ever read this blog without crying. Jack is such a fighter and I can't believe that his little half pint body can do what it has. He's got a mission here and he knows it! I'll be praying for a good weekend for your family, full of good news!! Hang in there!

Janette
(Lizzie Hinckley's sister-in-law)

Cameron said...

We are constantly praying for little Jack. What a blessing he is! It was so touching to see Sarah holding him. What wonderful and loving parents he has, he is one lucky little guy. Know that you guys and Jack are constantly in our hearts and prayers. We love you.

Love,
Uncle Cam and Aunt Sarah.

The Buckley's said...

You guys are such amazing parents. We pray for your family constantly and will continue too. Hang in there! Love - Kimmy

Kath said...

It was so good to see you guys for a few minutes the other night. You both have such great attitudes and I know that helps Jack so much. He is such a tough little guy with wonderful parents and lots of people who are praying for him continually! Thanks for all the updates.
Love,
Kathleen

Jer & Lu said...

If it's not one thing, it's another! What a rough go. You three are so tough during this hard journey. Our thoughts and prayers are with you, hoping to keep up your spirits. Best wishes!

Roger said...

it was such a sweet moment to see Sarah hold her baby Jack last night-- we pray this will be the first of many! We unite our faith and prayers for the tender mercies to be with Sir Jack during the next few days. We need him for a Ute victory today!

Maranda said...

You guys are so strong! Sarah, I loved seeing you holding your little Jack. Thank you again for keeping us all up to date on how Jack is doing. We will continue to pray for your family. Hang in there.
Love, Maranda

Brooke Varner said...

Sarah, I just wanted you and your family to know that you are in my prayers and tell you how much we miss you at work. Your smiling face always seemed to light up the floor. Jack is such a lucky baby to have you two as parents! Call if you ever need anything.

Brooke Varner

Michelle said...

Oh sweet little Jack-- poor baby! I pray this will be a better week. Lots of love to all of you, M

Ada Bowler said...

My heart goes out to you and little Jack! I can't imagine all that you all have been through, but know Jack is the luckiest little guy to have such amazing parents. Hang in there! We love you and keep you in our prayers! love, Ada