Unexpected visit continued

June 21, 2011  Unexpected visit continued…

We are now at the end of day 9 of the unexpected hospital visit.  Josie has been a bit of a mystery once again to the doctors.  The fever and the rash are not explained – they are still treating her with antibiotics to make sure it wasn’t something bacterial, but nothing grew from the blood cultures that they took to pinpoint it as such.  Aside from the fever and rash, Josie’s blood counts started to drop and then they bottomed out and have been hovering at the bottom for the last 4-5 days.   The latest conclusion is that Josie had several factors that affected her blood counts.  The first is that the higher dose of chemotherapy that we administer to her at home, had finally hit her threshold, causing her counts to drop (similar to the chemotherapy she had inpatient) and she also contracted a virus of some type.  The combinations of those two things have wiped her out.  It is taking her body a while to bounce back from the attack it has had on it.  One doctor has let us know that Josie is not critical, but it is just going to take time.  Josie’s blood counts have to be at a minimum number and show that they are rising in order for us to take her home.  Currently her infection fighting cells are at zero, so she is considered neutrapenic – or at high risk if she were to get something else.

At this point, she has had 2 platelet transfusions and today she received a red blood cell transfusion.  She was starting to look a little pale and her lips had very little color, so I knew she was low in red blood cells even before they told me.  She is much pinker tonight and hopefully feeling better with the transfusion. 

Tonight I did find that she may have a little bit of a yeast infection – I immediately put on her “Magic Butt Cream” (no lie…that’s what it is called!), which has medication in it for clearing up a yeast infection.  The doctors will check on this in the morning to see how she is doing.  She may also be running a little fever now – hoping for nothing new, but glad that the nurse tonight is so concerned.  More blood cultures being checked.

Meanwhile, the other girls are having a blast going to day camp and then spending the rest of the day with their good friends.  They are wiped out when they get home, but they are having a great time.  Marc and I are once again like ships passing in the fog.  I saw him for a whole 15 minutes today and that was 10 minutes more than expected since the PA was in the room talking to both of us this morning.  This is a crazy life! 

That’s all for now and hopefully an okay night of sleep here with Josie.

Blessings,

Darcia & Marc

New Doctor

9/2/10 New Doctor

Amazing - it is September - in some ways life has zoomed by and in other ways, it feels like we have had the longest summer ever. Somehow things don't balance out though!

It has been quite some time since we last updated everyone on Josie and I have promised to write today - despite a cranky baby this morning. :)

Just a clarification and a little bit of surprise, the rash on her head ended up not being what I thought it was in the last posting. The doctor called (a week after I should have received the results) and said "by the way, the rash actually was a staff infection - good thing we put her on the antibiotics." The only problem - we hadn't started her on the antibiotics because we had made the decision to not give her the medicine if she didn't really need it and we assumed we would hear back from the doctors office as soon as the results were back - not a week later. I talked to them about that "slip" and they were extremely apologetic and were going to look into the situation. So, we did end up giving her the antibiotics and her infection has now cleared up and gone away.

The last few weeks since the MRI posting have been relatively quiet, mostly doctor appointments and a couple of unexpected feeding tube checks. The first tube check happened because Josie got a hold of her tube and pulled it out about an inch and a half and the second tube check happened because her feet got stuck on the medicine port portion of her tube and pulled it out again about the same amount, so with that one we weren't worried about taking her in for a check, until we noticed medicine in her spit-up the next morning, so in we went AGAIN. You know it's bad when the radiology tech knows you by name and laughs when he sees you come through the door. Each time she was checked, the tube was still placed in the intestine, not as far as it had been initially, but doing what it is supposed to be doing. I always feel like the over-anxious parent after these visits, but the radiologist tech assures me each time that I did the right thing by bringing her in.

Needless to say, the feeding tube has been the most frustrating thing with Josie. Not just the fact that it can easily be pulled out and that she has tape plastered to her face all the time, but it is an inconvenience to carry the pack around too. The main frustration though is that Josie has really bad reflux which could possibly be a side effect of the tube, although we have been told by several doctors and specialist that it probably isn't. A lot of babies have reflux, but in Josie's case, her feeding tube bypasses her stomach and goes right into her intestine, so she has nothing but saliva and stomach acid that comes out when she refluxes. (hopefully that is not too detailed for some of you)

We had been trying her on a pacifier and the bottle throughout the day in order to get her used to sucking. She started sucking really well on the pacifier (never on the bottle), but inevitably about 10 minutes later, she would gag and reflux because she swallowed to much spit while sucking on the pacifier. We still thought it was progress, but then last weekend, she started gagging almost immediately when we would put the pacifier in her mouth. We have been told by the doctor to stop trying with the pacifier and bottle for the time being so that she does not develop an even worse aversion to them and until the reflux issue is solved. As the saying goes, "1 step forward, 2 steps back".

We met with a new doctor yesterday - she is a neuro-development doctor. One of her specialties is working with the feeding process - she will now be the doctor heading up the management and direction of the feeding tube as well as her reflux/gagging issues. YEAH! We are so thankful - this has been one of those things that had been dropped as to who would manage her feeding issues, so a real answer to our prayers. This doctor will also follow all of the other developmental areas too for Josie - another praise!

The doctor is quite concerned about the reflux issue and wants to resolve that before we do anything else. She has ordered an ultrasound of Josie's stomach and esophagus to start the process for determining why she has it so bad. I am waiting for the call today to schedule a time for the ultrasound. Once we find out what needs to happen and start the process (whatever it may be), then we can start up on the sucking and swallowing process. The doctor also started us on a new formula for Josie that is partially broken down already since she is missing that digestion process by her tube going directly to her intestine. This change could also help with her reflux – not sure how that happens, but the doctor said it could calm it down. I must say – formula is already not a pleasant thing to smell, but this new formula smells disgusting – don’t know how babies handle that stuff! If it does the trick though, we are all for it!

Finally, some basic stats of what Josie is doing and how she is growing – she is now officially a 10 pounder and filling out beautifully – little rolls and everything. She is now smiling and cooing quite often. She has a beautiful smile (biased I’m sure!). As far as her development, there has been some concern that her left side might be affected since her tumor was on her right side and actually replaced some of her brain on that side, but so far she is moving all limbs equally and both eyes track together all the time. In fact we were very excited the other day because she grabbed one of the toy butterflies on her bouncy seat with her left hand and she was holding on pretty tightly. It was a great assurance that the left arm/hand is working just as well as the right. She truly is a miracle baby!

We continue to be on our knees for our little Josie and know that God has great things for her. She has already taught us so much about ourselves and about the great God that we serve in the past 8 weeks. We could not and would not be in the place that we are without trust in the almighty One as well as the through the great support of people that He has brought alongside us.

I have already seen such miracles in Josie and look forward to seeing more and more!

Blessings,
Marc & Darcia

MRI Update

8/19/10 MRI Update

On Monday Josie had her MRI - all went well. They ended up sedating her which meant she needed an IV and a breathing tube. I was taken a little off-guard when they said she would need a breathing tube. They wanted to safeguard her airway while under sedation and also the fact that she would be far away in the tube if something did happen. We were fine with that scenario once it was explained, but also concerned because the last time she had the breathing tube removed, she had "strider", which is what makes her voice sound scratchy. She did just fine though and only had a little scratchiness right after it came out and then it cleared up.

The appointment with the Neurosurgeon went very well. The MRI showed that Josie's brain which was squished over to the left by the tumor was now back to the center. Very good sign! As for the tumor growth, the doctor did not believe it to be growing. The tumor did look different, but he said it is probably folding in on itself because he took the center out in the first surgery. He was very pleased with her progress and how well she is healing. YEAH! Josie has another MRI in one month. Not sure if this will be a monthly process, but the doctor would like to watch this tumor carefully and if possible, get her to 6 months old before the next surgery. We are very pleased with this report.

As for other updates, we are in the process of getting another specialist involved in Josie's care. No one was really "in-charge" of her feeding tube, so now we will be meeting with a GI doctor or specialist that will direct what happens with her feedings and reflux issues. To this point, these 2 things have been the items that have caused us the most concern, so we are glad to have someone stepping in to help Josie.

The rash has pretty much dried up and our conclusion is that she has normal baby "cradle cap" and due to the steroids in her system, they flared up into the rash instead of showing up as just dry scaly scalp. That is not an official prognosis, but it seems to fit with everything that we have been told.

It has been really nice the last couple of days - we are actually home without any appointments - maybe this is a a glimpse at the "new" normal.

Blessings to all...
Darcia & Marc

MRI scheduled

8/15/10 MRI

We have had a pretty "normal" week of doctor appointments and life at home. We had one unexpected trip to the Pediatric clinic on Thursday (which she had an appointment for Friday already and we went to that one too!). Josie broke out in a rash all over her little head the day after she got her new feeding tube. We watched it and let the doctor office know about it early in the week, but then the rash started getting worse and sores started popping up under the tape holding her feeding tube. The tape was right by her eyes, so her eyes also got infected. On Wednesday afternoon we called again and they wanted us to bring her right in Thursday morning. They tested for bacterial and viral infections and so far nothing has been confirmed about what the rash is on her head. After 2 baths, the spots have somewhat cleared up and dried, but her little head looks pretty yucky.

Tomorrow (Monday, August 16) we take Josie in for an MRI. This will be her 1 month image following her brain surgery. This will be a long appointment - approximately 1pm-5pm. Josie will be put under with general anesthesia because she has to hold absolutely still for the scan.

Keep us in prayer - we will meet with her neuro-surgeon on Tuesday to go over the results.

We have been so well supported by everyone - thank you for all the help, we have needed it and appreciate it more than you'll ever know.

Blessings,
Darcia & Marc