He's here! He's here! Sir Caleb is here!

Well, we went (John came with me this time) to the hospital yesterday disappointed...and came home...MANY hours later...a whole family! :) We were not at the hospital, in Caleb's room, but a few minutes when his "case manager" came in to see how things were going for his release. We told her for some reason, he was not being released today, but we were not exactly sure why he was not being released. She got on her phone to the cardiologist and found out that he just needed to have his incision checked by a wound care specialist and for her to teach us how to take care of his incision, as well as one last set of lab work to check his electrolites. He passed both of these final two tests and so the paperwork began for his discharge...

Wow, we have never been so overwhelmed (and remember, we have adopted a child too!) with so much paperwork and different people talking to us about Caleb's needs. From how to run the feeding pump, how to take care of his incision, how much he should eat and how, what medications he needs and how they need to be administered and when, and don't forget the home healthcare deliveries for all of his medical supplies! Whew!

We finally pulled in after 8:30 to a wonderful family crowd to welcome him home!! Aunt Diana and Katelin were here with a big sign to welcome him home too...decorated with gauze pads, band aids, etc. :) Ryan made a sign across our front porch that said "He's here! He's here! Sir Caleb is here!" What a wonderful welcome for him.

After a month long journey, traveling 90 miles a day, we are so thankful to have him home. We could never have made it without all your prayers, support, meals, and don't forget our parents who have provided more babysitting hours for Ryan and Sara then would could ever count! THANK YOU all so very much!! He is home thanks to each and every one of you.

Here's to the next chapter...

Here's hoping it is Christmas Eve...

We are truly hoping that tonight is Christmas Eve in our household! The cardiologist actually told the nurse this morning that Caleb will be able to come home in the next day or two. Here's hoping tomorrow is THE day! :) Here's hoping that tomorrow is Christmas for our house!! That is certainly what it feels like...anxiously awaiting Christmas morning...anxiously awaiting the call to say Caleb can come home!

They increased his profusion medicine again today from .45 ml to 1 ml., as he was still high-sating in the upper 90s, even 100 again today. So we truly pray that the major increase will do the trick and bring down his oxygen numbers to where they need to be to make the cardiologist happy in the morning. He can be released over the weekend, but I am sure it will not be with the same amount or quality of information that we could receive on a weekday.

Somewhere along the way today they increased the amount of each feeding again. Now his goal is to drink 75 mls in a bottle. He actually drank all 60 mls at one of his feedings during the night last night, which totally surprised me. He has not come close to drinking that much at any of his feedings so we have no idea how that nurse got him to drink a whole bottle. Not sure how long it is going to be before he can drink all 75 mls at each feeding. They apparently increased the amount because he has not gained any weight the last couple days.

We certainly appreciate the prayers that his oxygen numbers would come down to a comfortable level overnight and the cardiologist will be pleased with what he/she sees in the morning!!

Merry Christmas! :)
Joanna

The never ending marathon...

Wow, who would have ever imagined that a newborn could handle an MRI without any anesthesia?! Well, Caleb did!! :) We got a call this morning to approve the procedure and the anesthesia being used, and I did ask the anesthesiologist about using as little as possible. He is a very sleepy boy and I figured he would sleep right through the thing, so I asked him to use as little as possible. I have no idea how the stuff works, I probably cracked the guy up with my silly request, but somehow, someway, Caleb did not need any anesthesia to get through the MRI. And, of course, the MRI was inconclusive again. Apparently it showed some areas where they could tell there was not a problem, yet there were a couple other areas that made them wonder if it was 'suspicious' for tethered cord. In the end, the pediatric resident doctor told me that he does not display any of the symptoms of tethered cord, so we just need to monitor this situation with our pediatrician. Hopefully it will not turn into a more serious situation once he gets older and bigger.

The surgeon is fine with Caleb's incision and it is not what is now keeping him at the hospital. Now it is back to the cardiologist because Caleb's oxygen numbers were running high this morning/today, so they have changed the dosage of his medicine. With that, we get to wait another 24-48 hours to see how he responds to this change in medication. Yes, it sounds funny that his oxygen numbers are actually too high, but that is an indication that his heart is working too hard and too much blood is now going into the lungs. The medicine is for profusion. It is helping his blood profuse to his extremities rather then all go into his lungs. Just a side effect to having the BT shunt in there to help get blood flow to this lungs. It is a little big for his size, but something he will grow in to, then he hopefully will not need any of these medicines over time, as he grows in to the shunt.

We are hoping that Caleb can be released before the weekend. Everything at the hospital tends to come to a halt over the weekends as all the specialists and 'real' doctors are not there. So if we do not get him out of there on Friday, I have a feeling we will have to wait until Monday! :( Please pray with us that this medicine change does the trick and we can get him home on Friday at the latest!!

Thanks so much,
Joanna

Day 22 / Post Op Day 8

Oh please tell me we are getting close...

Today was a much better day in regards to Caleb's oxygen numbers. Thank goodness!! Doctor said he just wanted to keep me on my toes yesterday...this momma didn't find it funny. ;)

We had a very quiet afternoon, with one feeding around 3 pm. He still only drank half of his bottle for me, which is what the nurse told me he has been doing since last night - drinking 30 of the 60 mls. We are hopefully looking at bringing him home either tomorrow or Thursday. Certainly hoping it is Thursday at the latest. According to the resident pediatric doctor that I work with on the peds floor, the cardiologist is just checking in on him during their rounds in the morning. I guess they have no other 'orders' for Caleb. The surgeon needs to be happy with his incision issue in order for him to go home. It was not infected, but they are certainly still watching it closely and keeping clean bandages on it. So here's hoping tomorrow it looks perfect enough for him to go home...although I have a strong feeling it is going to be Thursday.

They have an MRI ordered for Caleb tomorrow to check out the "dimple" at the top of his back side. They did a sonogram on this area over a couple weeks ago and the results were inconclusive, so we are praying that the MRI tomorrow shows no deformity and that we are not looking at tethered cord syndrome on top of his other issues. We do not need any more! Please pray for him as they will have to sedate him in order to get the MRI done. Please pray that the MRI does not show any issues, as we could be looking at another surgery for him someday if it does show that he has a tethered spinal cord. So he could use prayers for the results as well as the procedure tomorrow. We are not crazy about them sedating him, but there is no other way to get the MRI done.

Thank you SO much for sharing this journey along with us! Here's hoping he truly can come home in the next couple days!!

Joanna

Happy 3 week birthday, Caleb!

Let's just say, we were truly thinking we were going to be able to bring Caleb home in a day or two...after today's visit...I now feel like it is going to be another 3 weeks. I also wish I could say that today was another holding steady kind of day...but it wasn't. When I went to see Caleb today his oxygen levels were all over the place. For some reason he has been holding steady in the low 90s since surgery, but today, he was only in the mid 80s at best and kept desat-ing into the mid-to low-70s. Very frustrating to say the least and with him being on a peds floor...well, lets just say it is hard to get the attention you feel you need in this situation. No one seemed overly concerned about it since he seemed to recover from the 'desat-ing' quickly, but it is just nerve racking to say the least to see him doing this today. We have not had any oxygen problems since they turned it off last week, so today...ugh! so frustrating! Just have NO idea why this would be occuring after many days of no oxygen problems?!

The nutrition specialist also decided today that he should be eating 60mls at every feeding, not 45 mls. I guess they base this on his age and weight, so it was decided to gradually increase his feeds this evening to 60 mls! We were having a hard enough time getting him to take all 45 mls. from the bottle, so I highly doubt he will be drinking all 60 mls. any time soon.

We pray that the doctors can easily figure out what is causing Caleb's low oxygen numbers today and hope it is a quick fix. We thought we were SO close to bringing him home...

Here's hoping tomorrow is a better day!
Joanna

Post Op - Day 6

It is hard to believe that almost a week has passed since Caleb's heart surgery! Some days certainly longer then others, but so thankful that he has made such huge progress each and every day! We are basically sitting in a holding pattern now and really just need him to drink from a bottle better before he can come home. The nurse today did not think his incision culture results must have been anything serious as he was not put on an antibiotic, so she assumed the preliminary results were negative for infection. I hope to get a doctor to call me tomorrow after their rounds, as we have not spoken with one in a couple days. Another downside to the peds floor vs. an ICU floor! I hope to get a better idea from them as to what Caleb needs to be eating by bottle in order for him to be able to come home.

He did a little better today with some bottles, but not all. So it was still up and down as to how much he could handle drinking by bottle before he tires out. He certainly tires out easily, esp. when trying to coordinate the sucking/swallowing/breathing pieces of drinking from a bottle. Please continue to pray that this will all come together for him soon. We are so anxious to bring him home and care for him ourselves!!

Thanks so much,
Joanna

Post Op - Day 5 - Holding steady

Hello again! We were all able to visit Caleb today as he was moved to the regular "peds floor" overnight. I can already tell a huge difference in nurse care, so here's hoping he gets to come home soon!! I wish I could say that I had a place to stay with him overnight or at least for a longer period of time, but I don't. He is in a double room and he is in the spot by the door. This leaves us with a chair next to his crib and that is it. The spot by the window has a bench seat, etc. to use, but not our side. :( The lack of nurse attention on a regular floor makes it much harder to leave him. He is more awake and alert the last couple days as well, so it is SO hard to leave him like that!! Those eyes just scream "please don't leave me here again"! :( I feel like he just lays there in his bed except for the couple hours that I/we are there to see him, hold him and talk to him. Like I said, getting much harder to walk away!! His blood pressure and oxygen levels continue to be good, so we are truly just dealing with feedings at this point in order to bring him home. He is suppose to get 45 cc every 3 hours. Whatever he does not take by mouth, he gets in his feeding tube. Well, today was not a good feeding day. Last night when they started this bottle process he took 30 cc's in the first two bottles. Unfortunately, today, he has hardly taken anything by bottle. I think the most he took for the nurse today was 20 cc's, but most of the feedings it was just 10 or so. Not sure if he is just not that hungry yet to eat every 3 hours or what the deal is, but he was wide awake for a couple of the feedings, yet he still only took very little. Hopefully it is just a matter of him getting used to being fed this often and maybe he is not feeling that hungry yet?? Not really sure, but hopefully his coordination of sucking and swallowing will kick in soon and he will start to feel hungry enough to eat that often as it will get him home sooner. I am not sure how much he needs to be eating by mouth before they will let him go, but the nurse mentioned it will probably still be a couple days. Here's hoping that is it!!

The surgeon also did not like the looks of his incision this morning so they sent something off to the lab to test it. Please pray he does not have an infection starting...that will certainly delay him coming home as well.

Please pray for his coordination in eating with the bottle and how his body handles it all. We are really hoping he can come home in a couple days, esp. with his new living arrangements! But that will all be determined by how well he is eating...

Thank you so much for sharing in this journey with us!

John & Joanna