Sunday, September 25, 2011

Aortic arch ballooning...again!

Hi everyone,  I have been having so much fun getting to know Kaleb that I almost forgot about my blog...do ya blame me??? I knew you would understand! I am sure some of you are eager for an update on my little man so here it is...well for the most part he is doing well.
He is gaining weight and growing and is smiling and cooing and being a wonderful little baby.
What isn't going so well is his heart!
He will be having a procedure Wednesday the 28th to balloon his aortic artery AGAIN! Thats right he had this done before it caused him to have a blood clot in his leg! Well the artery is 85% blocked and that is VERY serious .I have been watching him very closely the last few days, hoping we make it to Wed. and not have to have an emergency procedure done before! So far so good, he does sleep alot more and wears out easier from eating and play, but doesn't seem to be in any pain. 
I appreciate any prayers you could give especially Wed. at about 11:00 am when he is scheduled to go in. They said he should be able to go home later that day but to bring a suitcase with me  just in case he has to stay. I can and will be staying in the room with him if he has to stay over night. 
I will let everyone know as soon as I get home how it all went. 
Thank you and God bless,
Ginger

Thursday, August 25, 2011

Getting to really know Kaleb...We are home!

Well, it's been a few weeks now that Kaleb has been home and he is doing very well!
 Tomorrow he will be 4 months old! Really???!!! Wow how time flies!
I have been learning so much about him, he is such a happy little guy. I thought that I knew him but I guess it is hard to get to know someone you only get to see every other day and then most of the time they are asleep and hooked to machines. We have our whole lives ahead of us and I am so looking forward to being his Mommy!
He has already been to a few Doctor appointments back at Riley Hosp. and we have gotten some good news and bad! Mostly good though!!!
Good News: Kaleb will be having his AV Canal defect fixed(open heart surgery) on Novembr 10th, at Riley Hosp. I will be taking him down on the 9th and getting him admitted and then spend the night with him in the Ronald McDonald House and his surgery will be in the morning on the 10th. Yeah, I can't leave him this time, I have hard enough time leaving him to go to the bathroom...hahaha!
Good News: He had a "sleep study" done on Tuesday the 23rd and the results from that were awesome, even though he really didn't sleep. We can now unplug him from the apnea monitor most of the time! He only needs plugged in over night and when riding in his car seat! woohoo!!!
Good News: Also we got to turn his oxygen down from 1 liter to 1/4 liter, yeah!
Good News: He is up to 10lb 9 oz as of todays weigh in with the Home Health Care Nurse, which also discharged him today from their services, she said he is doing great and they are not needing to see him anymore !
Bad News:(  he has mild acid reflux and had to be put on another medicine to help control it, Prilosec!
Good News: The Prilosec worked!!
See only one Bad News!
I am so thankful for every second I get to spend with him, he is such a beautiful little boy and I am sure the Lord has big plans for him.
In His name,
Ginger

Thursday, July 28, 2011

Kaleb is coming home!

Yep that's right it is finally happening! Tomorrow(Friday) we are going to Riley Hospital to spend the day and night with Kaleb and possibly be home Saturday. If we do not feel comfortable yet we can stay Saturday night also and come home Sunday.
 I am so proud of my little man, he is such a strong little guy, of course he knows nothing else except Hospital life and I cannot wait to show him all the beauty outside!
If only I could hide the "ugly"!

Wednesday, July 27, 2011

Learned Alot Today

Today was a very long day! My oldest Daughter, my Mother, my Mother-in-law and I , all went to Riley Hosp. today to learn. What did we learn....  Infant CPR, about oxygen monitors, heart and respiratory monitors, G-tube feeding, giving meds through the G-tube and inserting a G-tube in an emergency if it gets pulled out. All of this took 4 hours!  I now have information overload!
The news on him coming home is " a couple days" they still have to do the car seat test, which the nurse said she would probably get done later tonight and straighten out some medicine issues. I am getting so excited, I can hardly stand the wait!
So as soon as I get the call I will let you know, if I don't just pass out from all the excitement!
Thank you all again for your continued prayers for Kaleb and our family!
Ginger
P.S. Here are the G-tube pictures I promised.
This is the tube right now.
Here is a close-up.

After a couple weeks they can put on what they call a "button" and take the tube you see sticking out off.
Then when it is time for him to eat you "plug" the tube into the "button" and feed him.
Thay make it sound so easy! I hope they are right!

Wednesday, July 20, 2011

G-Tube surgery

Well today was the big day! G-tube and circumcision! Kaleb did really well and was off the breathing tube right away, unlike previous surgeries when it took all day and sometimes two! He seemed to be feeling okay, in a bit of pain, but the anesthesia wasn't worn off  when I saw him right after surgery at 11:00 am, he is probably "feeling" it now, but they said they would be giving him pain meds if needed! He is such a trooper, I am so glad he won't remember any of this!
Here are some  pics of him after surgery, this is one reason I created this blog, I always wanted to see what my child would look like after procedures and could never find pictures .

On top of his head is his IV line, they like to put it there on infants , easier than their arm or leg!

Kaleb trying to wake up!

Sorry I forgot to take a picture of the G-tube, blond moment!
I will get one at next visit and get it posted for you!

Saturday, July 16, 2011

Kaleb is coming home soon!

HI everyone, thank you all for your continued prayers. It looks as if Kaleb will be coming home in the next 2 weeks.
We went to Riley yesterday for our second "care conference",(this is where the DR.'s and nurses give you updates on how your kid is doing) and they said about 2 more weeks and this is why:
1. We (the Dr.'s and us) have decided that a G-tube would be best for Kaleb. A G-tube is a tube that goes directly into the stomach for feeding, no more tube in the nose/mouth. The Dr. said that since Kaleb has been on the NG tube (the one in his nose)since birth, he could develop an aversion to things in his mouth and that would be bad, he may not want to eat , ever! So we are getting it out! Kaleb will continue with bottle feeds, this will just help him with whatever he cannot do through the bottle. He is doing well with the bottle but he still gets very tired, this is due to his AV Canal defect (hole in his heart), after his surgery to repair the AV Canal defect he should be able to get rid of the G-tube.
This G- tube installation is an operation, so it will require some recovery time afterward.
2. They will be doing his circumcision while he is sedated for the above surgery.
3. They need to do a sleep study on him. This is where they will decide how much oxygen Kaleb needs.
4. He has to do a car seat test. This is where they monitor him in his car seat for the length of your car trip home, our case 1 1/2 hours.
5.The first night away from the NICU we have to stay in the "Towers". This is a place families can stay inside Riley with their child for the first night in case anything goes wrong or forgotten questions arise! And the Dr.'s and nurses are a few steps away!
So ...all the above takes time, schedule of surgery, hopefully they can get him in on Monday or Tuesday, then recovery a couple more days, then sleep study etc... so you can see we are getting there!!
Anyway I have been really praying about this G-tube operation, it is an elective surgery and I keep telling myself it is to help him eat and stuff but I feel bad putting him through another surgery. If anyone has experience with this, I would love feedback from you.
Also we have already seen the ignorance of people who lump everyone with a disability together without seeing what their individual abilities are. YES, here at Riley Hosp. The Dr."on duty"( they are on for 3 weeks at a time) said in our last "care conference" that she didn't think Kaleb would be able to take a bottle because children with Down Syndrome have low muscle tone and have week esophagus', surprise he can take a bottle and he does it well, she said in this conference how surprised she was, she couldn't believe he could do it! She said he surprises her with alot that he can do! Doesn't surprise me, he has been a fighter from day one! I knew he could do it! Why? Cause I am the Mom that's why!! Sorry had to vent a little!!!
Hope I didn't forget anything , sorry the note is so long.
Thank you again for the continued prayers, I see the light and it is Jesus!
In His Glory
Ginger

Tuesday, July 12, 2011

Sleepy boy


Kaleb was sleepy when I went to see him on Monday, he had just finished "tummy time" and lunch so just got a couple pictures of him to share. They had to move his feeding tube to his mouth because his nose was getting sore from it.