Emotions

If you follow Tommy or me on Facebook, then you know this past week didn't quite go as planned.  If you don't follow us, here is what happened.

When John had his airway check on Wednesday the 1st, the doctor told us to plan to be admitted on Monday, the 5th.  I got a call from the nurse on Thursday that said we would get a call on Monday when a bed was ready for John and to wait for that call before coming to the hospital.  So after a fast trip to Kinder for Easter, Monday came and we waited. 

I planned to keep John home from school because I had already told his teacher, the attendance clerk and his bus driver that he would be out Monday-Wednesday.  So with John hanging out at home we waited, and waited, and waited.  Finally around 2:30 in the afternoon, the phone rang.  The nurse told us that the hospital was full and they didn't have any beds for John for that night.  She said they were hoping to have some discharges that evening and he would be put back on the list for Tuesday. 

I decided it best to send John to school on Tuesday since we wouldn't hear anything until the afternoon anyway.  It was around 3:30 on Tuesday afternoon and I still hadn't received a phone call.  So I called the number to admissions and they transferred me to room management where I was told that once again, they had no beds available.  Now on to Wednesday.

On Wednesday, Tommy decided to call around 12:30.  He was told they did not yet know if there were any beds available, but they would call by 3:30.  Around 2:30, I got a call that they yet again had no available beds.  On to Thursday.

I spoke with he nurse for John's doctor on Thursday morning.  She said as of that morning it didn't look likely there would be a bed for Thursday night.  She also said that she had spoken to his doctor and she said she did not want him admitted over the weekend because there would be doctors there who were not familiar with John.  So if there was no bed for Thursday night, we would have to wait again until Monday.  Later, we got the call that there was indeed no bed for Thursday.

So here it is, the weekend, and we are still waiting for him to even be admitted to the hospital just to start the process to see if he's ready for his trach to come out.  To say last week was an emotional week for me is an understatement.  I had trouble eating and sleeping, and trust me when I say I have never had trouble with either of those things before in my entire life.

I know I should be happy that he is healthy and not one of the sick kids in the hospital, whose parents are waiting for them to get better and go home.  I know I should treat each day as if nothing has changed.  I mean, we have done this for 9+ years after all.  What's one more week, right?

On the other hand, WE HAVE DONE THIS FOR 9+ YEARS!!!  I'm ready to be done with this chapter.  Our son has had one diagnosis after another.  Nothing in his life has been easy.  Although, I don't think that he is aware that his life is not easy, I am very aware.  And I am just so ready for him to have one of those difficult parts of his, and our life, go away.  I'm ready to close this chapter of our journey.  Our journey will by no means be over, but maybe it will be just slightly easier and better.  His and our quality of life will be slightly better and we can start to get used to a new normal.

We are just trying to make the most of our weekend together.  I'm trying not to think too much about it all and just enjoy our time as a family.  John has a soccer game today and then I may take him to a movie later.  Tomorrow will be church, nap and laundry day and then Monday, we will start the game all over again.

Please pray that a room will become available sooner rather than later.  And pray for Tommy and I to have patience and peace while we wait.  Hopefully my next post will come from the hospital.

Quick Update

I just wanted to say thank you to everyone who has been praying for us.  We have sure felt those prayers this week and I know we will continue to be blessed by them as we go into next week.  I wanted to update you on a couple of things we asked you to pray for.

First, John had his airway check on Wednesday and everything went great, just like I thought it would.  The Dr. said there was no granuloma that had formed and there was nothing new with his airway.  So the first step is completed and successful.  Now we are on to the next step.

We are expecting to get a call from the hospital on Monday letting us know they have a bed available for John.  When we get that call, likely in the afternoon, we will head up to the hospital.  So continue to pray for that first night, when he sleeps with his cap on.  The doctors will be looking for him to have no significant oxygen desaturations.  If he is able to sleep through the night with no significant desats, then we will be ready to take out the trach on Tuesday.  I'm pretty sure the parameters for the 2nd night will be much like the first.  So please continue to pray for us on Monday and Tuesday, as often as you think to.

And the other thing we asked you to pray about is his congestion.  I am happy to report that it seems to be clearing up.  Although his trach secretions still are more than usual, his nose seems to have cleared up, and that is the part I have been most concerned with.  But we still have the weekend to go and knowing that we will likely be outside most of the day tomorrow, we are still asking you to pray that we can keep his allergies at bay.  He is taking his regular allergy meds so we are just hoping they do their job and he can go into Monday with his nose still clear.  He is in a fantastic mood today and I am hoping that will continue.

There is a slight possibility that they will not have a bed available for him on Monday.  If they don't, then they will put him on the list for Tuesday.  We are really hoping that they have a bed on Monday because we are ready to get on with this and not have it drag out over the course of next week.]

May you all have a very happy and blessed Easter weekend with your families and friends.  And let us all remember what it is we are celebrating this weekend.

xoxo