'Do not be anxious about anything, but in everything, by prayer and petiation, with thanksgiving, present your requests to God. And the peace of God which transcends all understanding, will guard your hearts and you minds in Christ Jesus.' Philippians 4:6-7
Today started out as a day full of reminders: the unknown, the thoughts looming of what information we were going learn and decisions that we would have to make; when we went for our first team meeting when I was pregnant with Noah, the weather was awful – it was so snowy; the roads were not fun.
We had to bring the kids away before heading to the hospital, but this time we had one very happy little boy who did not need to come to the hospital but was able to stay and play at Oma’s all day with Danielle and Jordan. That really makes Noah’s day!
But, that is where the similarities ended. Today, Rob was (and still is) not well. He was so sick all not; the poor man had to drag himself out of bed and take some Gravol to be able to come to this appointment with me. (Isn’t he great?!).
We got to the hospital to have the reception not know what we were talking about and need to make a few calls to find out where we were supposed to go. What she found out was so disappointing: the doctors had met amongst themselves and then each gone their separate ways. What!?!? Yes, you read that right. It turns out that the leading doctor in all of this ‘didn’t realize that he was supposed to meet with us’ after the meeting.
I did get to speak to him on the phone and get the run-down of what was discussed at the meeting, but really…it’s definitely not the same as being able to sit down and discuss, digest and ask questions. We were quite frustrated and disappointed by this.
Here is a bit of what was discussed:
- Noah had so many complications last year when trying to connect his bowels together that there is not rush to try doing that again. The concern is that if we do try, Noah will get backed up like he did last year and it will not put us ahead.
- Noah has not had many respiratory issues in the past year and a bit, so there is no need to rush into doing a tummy tuck.
- A tummy tuck cannot be done until Noah’s colostomy is gone and his bowels connected.
- There is the possibility, and recommendation, to give Noah a mitrofanoff catheter (a permanent catheter placed into the bladder through the abdomen, which is easier to use and which would be much easier for Noah to learn to do himself …there is much for us to learn and think about in regards to this procedure.
- The focus now is on descending Noah’s testes, which will likely be done in March/April of next year (after the baby is born).
Although today did not go as planned, we were still given a direction and things are on the right path to have Noah taken care of. As much as thinking about future surgery is not enjoyable, we do realize that we are looking at the long term for Noah and we want what is best for him and will make life a little bit easier for him despite all of his issues. We are thankful that we do not have to be looking at another surgery in the very near furture.
Even though we were not part of the discussion, we can see the hand of the LORD at work and are so thankful for His Fatherly care.
Today started out as a day full of reminders: the unknown, the thoughts looming of what information we were going learn and decisions that we would have to make; when we went for our first team meeting when I was pregnant with Noah, the weather was awful – it was so snowy; the roads were not fun.
We had to bring the kids away before heading to the hospital, but this time we had one very happy little boy who did not need to come to the hospital but was able to stay and play at Oma’s all day with Danielle and Jordan. That really makes Noah’s day!
But, that is where the similarities ended. Today, Rob was (and still is) not well. He was so sick all not; the poor man had to drag himself out of bed and take some Gravol to be able to come to this appointment with me. (Isn’t he great?!).
We got to the hospital to have the reception not know what we were talking about and need to make a few calls to find out where we were supposed to go. What she found out was so disappointing: the doctors had met amongst themselves and then each gone their separate ways. What!?!? Yes, you read that right. It turns out that the leading doctor in all of this ‘didn’t realize that he was supposed to meet with us’ after the meeting.
I did get to speak to him on the phone and get the run-down of what was discussed at the meeting, but really…it’s definitely not the same as being able to sit down and discuss, digest and ask questions. We were quite frustrated and disappointed by this.
Here is a bit of what was discussed:
- Noah had so many complications last year when trying to connect his bowels together that there is not rush to try doing that again. The concern is that if we do try, Noah will get backed up like he did last year and it will not put us ahead.
- Noah has not had many respiratory issues in the past year and a bit, so there is no need to rush into doing a tummy tuck.
- A tummy tuck cannot be done until Noah’s colostomy is gone and his bowels connected.
- There is the possibility, and recommendation, to give Noah a mitrofanoff catheter (a permanent catheter placed into the bladder through the abdomen, which is easier to use and which would be much easier for Noah to learn to do himself …there is much for us to learn and think about in regards to this procedure.
- The focus now is on descending Noah’s testes, which will likely be done in March/April of next year (after the baby is born).
Although today did not go as planned, we were still given a direction and things are on the right path to have Noah taken care of. As much as thinking about future surgery is not enjoyable, we do realize that we are looking at the long term for Noah and we want what is best for him and will make life a little bit easier for him despite all of his issues. We are thankful that we do not have to be looking at another surgery in the very near furture.
Even though we were not part of the discussion, we can see the hand of the LORD at work and are so thankful for His Fatherly care.
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