November 17, 2008


Having a baby at home is exhausting, but we are loving every minute of it! Max is doing great. We go to dialysis four times a week (MWTHF) for about 3.5-4 hours. Max is on the machine for 2.5 or so, but with prep time and the time it takes to get him on and off, change his catheter dressing, etc, etc we are there for a bit longer. Unfortunately, Max seems to be very fussy while he is being dialyzed. I think it's a mixture of nap time, having tubes coming out of his neck and the cramping the dialysis can cause. Once we get him to sleep though, he seems to do pretty well. Overall, I would call hemo dialysis a success.

I was informed today that Max will most likely need more blood transfusions, but they are not wanting him to get blood from several different donors. I don't know the main reason for this but, but it has something to do with a potential problem when it comes time for the transplant. So, they told us that we could find someone that is non blood related with a blood type of A+ that would be willing to donate blood so that he would be getting it from one person and one person only. They didn't know the logistics of it, so I have to get in contact with Hoxworth to see what steps we need to take. On my list of to do's.

We also got a call from his urologist saying that they are wanting to do a scope to check out the urinary tract. If they found something that needed to be fixed, they would do another surgery to fix that and then close up his vesticostomy (the hole in his belly that he urinates from). One more surgery, but one less hole in his belly! I have to get in contact with his office tomorrow to see what we need to do to get this ball rolling. Another item on my to do list.

I got introduced to my new favorite person today. Her name is Peggy and she is the holistic and healing touch nurse in the nephrology department. She gives massages to the patients that are on dialysis. She also gives massages to the parents that are there waiting. Oh yes.... I got my very first massage today and she told me that she will continue to give me one once a week. It was so wonderful! Max gets his on Wednesday. Tim was a little jealous :o)

Some not so fun news... Max goes for his six month immunizations tomorrow morning and I am FREAKING OUT! If you remember, he got a 104 degree fever with the last set and personally I am not ready for him to go back into the hospital for it again. Praying oh-so-hard that we get through this. Tylenol is already in the diaper bag to be given as we are walking in. I'll keep you posted.

I think that is it for now. I am off to do dishes, laundry, pull up meds, pack the diaper bag, and change Max's diaper one more time for the night. We'll talk to you all very soon!

RCNIC Nurses:
We are in the Dialysis Unit M-W-F around 11:45am and Thursdays at 8:00am. If you would like to come down and see Max, we are there until about 3:30pm on MWF and 12pm on Thursdays. We could also come up to see you, just let me know what you would like for me to do :o) Max misses you all very much! We'll see you all soon!

8 comments:

Rachael Schirano \\ Rachael Schirano Photography said...

i am so happy to hear that dialysis is going so well for max, that is wonderful news. i know it must be enormously taxing on you, but it has to feel so incredible to finally have him home! i think that the holistic and healing touch nurse is such a fantastic addition to the medical team...what a nice touch and so perfect for both of you! sending up lots of prayers for you all!

Anonymous said...

Hi, I have been following your story for a while now. I was just wondering if you could email me.
erinm5184@aol.com. Thanks!!

Anonymous said...

Thumbs up back at ya!

Continued success!

DS/BBHS

Jennifer Rose said...

Hey Beth, this is JenRose05 from the Cincy babies board and just letting you know that I am almost positive I have A+ blood type and would love to help if I can

Jennifer Rose said...

Oh sorry my email is JenniferRoseLake@yahoo.com if you want to get in touch with me

Anonymous said...

Hi Beth -

I think I am A- but I'm definitely willing to do a blood test to find out if they can do that. let me know if you need me in any way.
denise
matilda&Leon
denisef_0520 @ yahoo

Anonymous said...

You probably have no idea who I am, but I'm LoriZ from the nest. I'm A+ and more than willing to help. nestloriz@gmail.com

Jen said...

Hi, this is Daves_sweetpea from the nest. I'm O+ and CMV negative. I know A+ might be better, but let me know if I can help.

Jenanddavewed@hotmail.com