HOSPITAL STAY

July 9, 2014

   John, Jake and myself left to get lunch and wait for the phone call to report to the hospital.  While eating, I got the call, "Hi, this is, as your son says, the bald nurse..."  :)
    Our room was ready and we headed over to McLane Children's Hospital in Temple.  I was more scared than anything...we still didn't know a lot about what was going on.  I just knew that Jake was sick, he needed to raise his platelet level and this was the treatment.  So, around 1 pm we were settled in the room, Jake found out how to work the remote to the tv and was able to order dinner.  He also thought he had a diving board in his room.....aka hospital tray table.  His poor nurse about had a heart attack when he climbed on it to jump to his bed.  She just said, "He's going to be my active one I can tell.  Most do not have energy on this floor."  I asked why Jake was on that floor and what other kids were there. She told me it was a step down from ICU so they didn't need to be monitored constantly like ICU and that all the kids on that floor had cancer or a chronic blood disorder.  In my mind I still believed this was just a quick overnight stay and we were going to jump start his platelets, get them back into sync with things....wishful thinking looking back now, but I couldn't tell myself he was really sick or I would not have been able to hold it together.  We walked around and found the play room.  What a saving grace!!!  It had even more toys and things to do than the clinic one.  Jake's IV was still in his hand from this morning even though we haven't had to touch it since.  Finally around 4 pm the nurse told us they received the medicine from the pharmacy.  The IVIG treatment should take around 8-12 hours as it is a slow IV drip.  She told us we would start around 5 pm. 
    So, five o'clock comes and the visitors also start showing up.  John and I still have not had time to sit and really think about what all was going on at this point.  By about 5:30 or 6 Jake was hooked up to the IV and ready to begin.  The thing was, he could not be up, moving around or anything during this!  At this point we were thankful it took so long because we knew he would be going to bed soon and that would help.  It is not easy keeping his still or confined.  His brother came to see him with my parents as well as my grandma. 
During the first 15 minutes, a nurse had to stay right with Jake and monitor his temp, blood pressure and heart rate.  She did and everything was okay.  She moved the medicine up some and watched for another 15 minutes.  At the end of this time, when she checked his blood pressure it had dropped.  It was around 70/40.  I honestly have no clue what it should have been but this was a drop from what it was.  She got another nurse to check him, monitor him and timed another 15 minutes.  After this time, he was good and they were able to raise his dosage again.  They raised it from 5, to 10, to 20, to 30 and I believe 40 was the max.  He was able to go to the max and stayed there.  All the time he was coherent, watching movies, drawing, speaking to us; just normal things for him.  
 Then Miss Jackie came and brought bags of fun stuff to keep Jake entertained.  Jackie was my teaching partner the past 3 years and I was so excited to see her!  I had her take me to grab dinner for John and myself and I remember it being so weird to walk out of that hospital and 'normal' things still going on.  
The rest of the night was pretty good and Jake actually finished the treatments in about four and a half hours!!  I was shocked at how fast it went.  They unplugged him and were able to take him off all monitors so we could get a goodnight's sleep by around midnight.  Jake had been out for hours by this time, but it was good for me. 
I woke up about an hour later to a poor child throwing up in the room next to us.  It was awful and I just prayed for her.  She had cancer and was getting treatment, so this was a side effect of it.  I prayed for her strength, I prayed for her parents, I prayed it would just pass quickly!!  Broke my heart to hear it but I just thanked God over and over that was not my child.  I hope that doesn't sound harsh but for the first time I was happy Jake "just had low platelets".  I saw it could be much, much worse!  Then around 6 am I woke to the child on the other side of us screaming they didn't want to take any more medicine.  Another heart wrenching sound I will never forget. It still makes me tear up weeks later just thinking about it.  I still pray for these two little kids even though I didn't get to meet them.  By this point, the hardest part of being in the hospital was that night and hearing the kids on both sides of Jake's room.  It was a nightmare and I can't imagine those poor parents as well. 
      Jake woke up happy, had his tv right in front of him and got breakfast served to him in bed.  He was loving this! The nurse then came in and took Jake's blood around 8:30.  We heard back later that his count was at 25 (or 25,000) and the doctors were discussing what to do with him.  They had only gone up by 9 from the previous day and with the IVIG treatments we were told they would "jump up within 24 hours".  It had only been about 10 hours so we didn't know what to think.  We had met with the doctor at the hospital off and on all morning and around noon we were told that he would be discharged and that we would do more blood work the next day or Monday with our PCP.  He was at a number they felt safe sending him home, they didn't think he would have bleeding in his brain, and we actually still had time in that 24 hour window for his numbers to raise.  John and I were okay with this....really what else could we do.  We got all packed up and headed out.  Jake's nurses and all the other nurses on the floor were waving by to him and just smiling at him as he was dancing to get on the elevator.  We stopped by the gift shop on the way out since we told Jake he could get a toy when everything was done.  We stopped to take pictures of Jake outside and we were sooooo happy he was done!  No more hospital, his body would just take over and do the rest, or so we thought.  We had been discharged a total of about 15 minutes and everything changed!

Here is Jake with his brother, Jaden in the hospital.

Here we are getting ready for bed.  He made me promise to sleep by him all night :)

Jake was such a good patient!