Hope for Max and Alex

Back at home!

Max was released from Sacred Heart yesterday morning and we are finally settling back in at home. I've just gotta say it is hard enough settling back in after either a vacation or hospital stay, but the combo is incredibly tough. Thankfully, my parents were here and able to unload the van and begin the unpacking process prior to our arrival from the hospital. Of course, Max also has new books, dvds, and a birdhouse with finger paints courtesy of Nana and Papa...basically bribing the kid to fell better :). Hey, whatever works.

We are definitely making progress on Max's lungs. For the past week it was the upper right lung that was giving us trouble. As of yesterday morning the darn mucus had migrated to the left side. We have had a couple of very productive respiratory sessions and have gotten most of the mucus out. Now we are taking trials off the Bi-Pap to see how he tolerates breathing completely on his own. He is still fatiguing quickly, but is not begging for his mask back on. He even got to spend a little time in his chair today. His spirits are great and he is talking up a storm (probably the extra oxygen :).

In other news, our pulse/oximeter machine (measures his oxygen levels and heart rate) started giving us crazy numbers yesterday. Not really what you want when you are watching them like a hawk. Needless to say the poor on call respiratory therapist had to come out and replace it. The best part was it is a newer and better model then our old one. Less buttons for nurses to accidently push at night and doesn't have to have all the numbers reset each time you turn it on. It is even easier to attach to his toe. Score! It doesn't take much to make Aaron and I happy...Max home and equipment that is easy and works.

A big thank you to our Charleston people! Our friends in Charleston once again came to our rescue. Between bringing food and running errands and letting us stay in their houses. One neighbor even offered to help get Max home in his RV. There were many who offered, but thankfully we weren't there long enough to accept. Our only regret is that we didn't get to connect with more people on our "visit."

For our MUSC friends, once again we brought our little guy to you and in return you all brought your "A" game. Aaron and I even learned a couple of new respiratory techniques to keep in our back pocket. It is truly a gift to be able to take your child to the hospital and breathe a sigh of relief when you know he is in great hands. You guys bring a strong argument to the table for our return to Charleston in the future. It was great to see everyone, I only hope next time we can just plan to meet for drinks!

Now as for us, we have lots of healing on the agenda this week!

Peace

 

We are now situated at Sacred Heart Children's Hospital in P'cola. The flight from Charleston to Pensacola was uneventful. We flew on a Cessna Citation with two pilots, a respiratory therapist, and a nurse. I may have found Aaron's future...
Max has been doing pretty well for the past two days. We are waiting to see if the doctor will discharge us to home this morning. His lungs are in much better shape, but still not back to normal. There is a little bit of collapse in the upper right lung, but we think there is progress. His numbers aren't as good as we would like, but we think we finally knocked loose a mucus plug in the right lung. Now we just need to get it out. This stuff is soooo thick!
The hospital is nice. It is much smaller than MUSC, but the staff is nice and helpful. Thankfully, they have wi-fi and a private room. I, however, am looking forward to some time in my own bed. Max keeps begging to go home. He wants to paint a birdhouse with Papa.

So looks like our lear jet has been commissioned for tomorrow, Saturday, as long as Max continues to maintain his oxygen levels. Today they did chest x-rays to ensure there was no evidence of pnemonia (since all that stuff is hanging in his lungs). Pnemonia was a no, but there is still some upper right lung collapse and yuckies hanging out in there. In other medical news our Robinul drama continues. This drug has been the biggest pain in our butt for the past year and it is by far Max's most vital medication. This is what dries out his secretions, so that Max does not aspirate on his own saliva. Tricare will now only pay for it if it comes through an infusion medical company (technically it is an infusion med, but can be given via mouth or g-tube too). Well, it took about 3 months to find an infusion company that carried the medicine with lots of help from Max's Tricare case manager. Curascripts was the winning company, but they are the biggest pain to deal with, because no one there knew they carried the med. It was SO IRRITATING to call and speak with the different customer service (or lack there of) people. Then Abigail called and she was awesome and has been on her "A" game every month! She was getting us the meds no problem and finally we could breathe a sigh of relief and not pay $300 a month out of pocket to order it ourselves at Target (yep, could go down the street to Target, but Tricare wouldn't pay for it there). Now I'm not knocking Tricare (cause lets face it, they pretty much rock out Max's necessities), if Curascripts could get there stuff together I have no problem ordering it through the mail. What I didn't count on was the FDA shutting down about half of the infusion med manufacturers making this medication virtually impossible to get right now. Needless to say we spent the afternoon working with the clinical pharmacist here at the hospital on a suitable alternative. Max is now testing a motion sickness patch that also dries secretions. The biggest side effect is apparently dizziness so if Max starts driving his chair like a drunk man then we will be back at square one.
So it looks like we had a pretty busy day, you know taking care of Max, networking an airplane with two hospitals, and researching new meds. I mean, hey, this is a pretty average day...well apparently MUSC's parking police thought we needed a couple of more things to do. Last night I got to the van to drive back to Jonathan and Kristen's house for the first full night's sleep in 6 days when I noticed a pleasant little parking ticket for $100 for having no expiration date (it's there, but faded) on our handicap placard. First of all the only reason I use a handicap space without Max is because we have been getting his chair in and out of the van during the day so that he can sit up for some of his treatments and to help his lungs drain, other than that I would typically park in a regular spot. There isn't room to leave his chair in the hospital room and its not really something you can leave in the hall of an ICU unit. Anyway, just want to point out that this is something we don't abuse. Secondly, the blue handicap placard is for permanent disabilities, so why exactly does it need an expiration date? Thirdly, our van screams handicap. There is lettering on the back explaining that it is ramp accessible (and asks drivers to park a sufficient distance away, which no one ever pays attention to), we have an MUSC kids license plate, and we have cure SMA stuff all on the back of it. Fourthly, I know this is getting long, but I am seriously annoyed, I noticed the date was fading, but we are changing our plates to FL anyway and I thought it seemed dishonest just to re-write it on there, because I could theoretically write whatever date I wanted. So this morning I called the Parking Office at MUSC, because it said all appeals must be made in purpose Mon-Fri and guess what we are leaving Sat. morning on a flight. They seemed really understanding. They just said to come down and they would dismiss it, so during one of Max's treatments, while the nurse and respiratory therapist were in his room I went to the office. Now this office was two blocks down the road and I got there and they wanted to see the actual handicap placard. Two problems, no one told me that and Aaron had taken the van home to get some sleep. I figured why did I need it, whether or not is existed was not in question the date was, but they didn't even ask on the phone, they said it was taken care of the minute they heard we were patients and not faculty or students. AND if I brought the placard with me how could I legally park in the space????? Let's just say Traci without good sleep, sick kid, and no lunch did not make for my most shining moment. I seriously wanted to wring the girls neck, which I grant you is an over reaction seeing as I just have to mail in a copy of the placard with my ticket and it will be dismissed. I guess what irritates me is that I see abuse of handicap parking spots all the time and there are many times when they park so poorly we are not even able to access Max's ramp to load him and I have NEVER seen a ticket on any handicap vehicle at MUSC. I am all for curbing abuse of handicap parking, because it is extremely frustrating for us to see a person swing into the last available ramp accessible spot in a parking lot and watch them hop out of there jacked up F-250 (not that this has ever happened :) ). I mean really dude you couldn't have used the spot three spaces down...
Okay, enough venting, on to better topics or at least more amusing...
We thought Max would at least be excited to fly on an airplane, but no such luck. He had a minor meltdown. I think his breaking point was the ambulance ride to the airplane and the inability for his chair to ride in the plane. We were able to convince him that everything was okay by explaining that Jeremy the Jet Plane from the Island of Sodor (moms of little boys are nodding their heads in agreement and understanding) has been sent to pick Max up as a special mission from Sir Topham Hatt. Max is very excited about this prospect. Everytime the doctor has come to check on Max he has asked if his plane is ready yet. Lets see, he wanted to make sure the wings were open, and the brakes and landing gear work. Ah, the son of a pilot. He is all over doing the pre-departure checklist. The ride is supposed to take an hour and ten minutes, not to shabby for a ten hour drive. I mean heck, why haven't we thought of this before. Looks like I get to be the lucky parental companion and Aaron will drive back to FL.My parents are going to be meeting us in Pensacola and Aaron will be there...much later.

Please pray for our safe travels tomorrow and also, but obviously not nearly as important, our open house is this weekend and we are really hoping for a good turn out and hopefully are able to sell it quickly.

Peace and Good Night!

Well, I would like to say we are back home in Pensacola after a wonderful trip to Charleston and a fantastic journey through the Georgia Aquarium…that, however, is not the story I will be telling.
I am typing now from our old stomping grounds of the Children’s Hospital at MUSC in Charleston, so here is a rundown of our last week and a half.
We had a great trip to Charleston last week. We were able to get the house prepared to go on the market. We were even able to make time to hang out with friends from our neighborhood. Thankfully, my mom was able to come with us so Aaron and I could really get to work on the house. Max had a pretty good week keeping Nana Dorman’s attention, and assisting her with pruning the roses all around the house.
We actually stayed in our old house on air mattresses and it wasn’t too bad, given that we left it partially furnished. Aaron, Max and I slept in the living room all together. We were able to hit many of our old Charleston haunts and even get Max a great haircut from Ms. Yolanda, our favorite over at Bangs and Bows. One of Max’s favorite night nurses came by to hang out with him a couple of evenings and Ms. Liz, his speech therapist came to see him as well. All Max talked about all week was going to the Georgia Aquarium. He was so excited. We felt like it was the least we could do given that he was such a trooper with us all week.
On Friday we finished cleaning and mulching and the house looked good. We moved over to our friends Jonathan and Kristen’s house for what was supposed to be a couple of nights. Now let me say that having the Highs move into your house for even one night is quite an ordeal. Typically we end up taking over the master suite because it is usually the only room in a house with enough table space for all of Max’s equipment. Then we can use the master bath for all of his medications and supplies. We don’t just visit, we MOVE IN (considering we travel with a “mobile hospital room”). Needless to say, you have to REALLY like at least one of us to tolerate this level of intrusion, not to mention all the boxes and equipment.
Unfortunately, on Friday night about midnight Max started having problems with massive oral secretions (read: mucus and saliva pouring out of his mouth). I was suctioning him at least every half hour and needless to say got very little sleep that night. At 5:30am I woke Aaron up and we did a treatment on Max and then I went to sleep for a couple of hours. He was no better when I woke from my nap. Our hope was that this was possibly related to an allergic reaction to Dexter, the dog. We made the decision to move Max back to our house where we could work on him around the clock to try and recover. So once again we were back in our house, living completely out of the living room and working on Max continuously. We were hoping and praying that this would resolve quickly and we could continue our trip as planned. Yeah, right. By Monday we were still not making progress on his lungs.
Now let me just make sure everyone understands…we do not take travel lightly. We pack a ton of stuff for cases like this. We always have extra supplies, an oxygen tank and medications for these moments and by always I mean when I don’t forget to pack them. We had brought Max’s “sick” nebulizers with us initially, but they must be refrigerated and upon unpacking them at my parents enroute I forgot to repack them…mistake #1. Mistake #2 was forgetting the little contraption that enables us to run his nebulizers with his Bi-Pap. This basically means that we don’t have to take him off the Bi-Pap, it just hooks into the hosing. We had the regular nebulizer with us, but that means he has to be off his Bi-Pap in order to get his meds. This was really not working. He would cry and cry that he couldn’t breathe whenever we took him off his mask. Mistake #3 was that we had oxygen, but only with an Ambu Bag attachment. We needed the hose to also run it in line with his Bi-Pap. Now in our defense we pack based off 2 excel spreadsheets, but we are always tweaking to make sure we have everything we need. Also, anyone who has ever been sick knows that when you are sick there is nothing that compare to your home environment. I mean really, who wants to puke in some else’s toilet? I guess the point is that we are prepared to handle most stuff, but this time it came on so fast and so strong that we were really far behind the power curve before we even started it seemed. It also didn’t help that this all occurred on a weekend, so even our home health companies were unable to provide the equipment we needed, as quickly as usual.
Needless to say, we had some decisions to make. If we were at home and Max was about this level we would probably be able to get him back to normal and healthy without any hospitalization, but there is no way he could tolerate a van ride for 10 hours back to Pensacola. On Monday we knew there were some decisions to make because we just weren’t seeing any progress with the state of Max’s lungs. Thankfully, the nebulizer that breaks up the mucus in his lungs, Pulmozyme, (the one I forgot in FL) was in high demand for Max’s care. Once again the Target pharmacy came through for us. They still had our RX on file AND had some in stock (the is not a med regularly kept on the shelf. Apparently, if you have a standing type of RX with Target they take the time stock it in advance, so there was still some left. This helped but wasn’t the silver bullet we were hoping for. By Tuesday we had a couple of options that we were toying with. The most popular being having my parents rent a RV in FL and drive it up and pick us up, so that we could run all of Max’s equipment and perform treatments in route. About mid-day on Tuesday we were no longer getting any mucus out even with the deep suction (small catheter down his nose and into his lungs). His oxygen levels were not good (hanging out in the 80s) and our decision was clear. If this stuff was too sticky to get out we needed reinforcements. We called Max’s pulmonary physicians at MUSC and explained our situation. She coordinated with the new Pediatric step-down ICU to have him directly admitted (not have to go through the ER). This is new unit that is run by the PICU, but for kids more like Max with chronic issues such as trached and vented patients. He has been improving since his arrival. His lungs are not clear yet, but we have been getting lots of yuckies (aka mucus) out of his lungs. His oxygen is hanging out in the low 90s and we are doing treatments every three hours.
Now how do we get back to FL…let’s be honest most of you have been around this block with us before. Max never “fully” recovers in the hospital. Usually they release him when his lungs are clear, but that means he still is in need of Bi-Pap support and extra treatments. Not really a recipe for a 10 hour drive, so here are the current possibilities: remain here until he is completely recovered or have him air-lifted back to Pensacola to Sacred Heart Children’s Hospital. If we stay until complete recovery it could be for 2 more weeks before Max would be fit for vehicle travel and that is being optimistic. We are also staying with friends or on the bed/couch in Max’s room, let’s just say we are definitely missing our own beds. There is also that little issue of Aaron actually getting back to work. It may be that Aaron would have to go ahead back to FL to get back to doing his job. We are fortunate that everyone has been very understanding, but if Max is stable and Aaron can work it is the responsible choice. Now if Max is airlifted back it could be as soon as a couple of days. The flight would only take a few hours and we would be able to run all his equipment en route. Whichever parent did not accompany Max would have to drive the van back to FL. Max would then be admitted to Sacred Heart and released upon finding his condition stable. With this we could be home by the middle of next week at the latest. I have to say we are leaning towards the airlift. We really want to get home as quickly as possible and we feel this is the safest route. Then we could get back to “normal” life. We should know by this weekend what will happen…stay tuned.