Finally Home!

Well, you know what they say about the best laid plans...we were hoping to be released from the hospital on Monday. We spoke at length with the doctors on Sunday afternoon. The scales had been tipped. There comes a point in time during Max's extended hospital stays when the risk of being there outweighs the benefit. The benefits we were receiving with IV antibiotics and treatments every two hours were going to be overshadowed by the other germs he was being exposed to in the hospital. By Sunday we could see that point coming. We basically run our own hospital at home and with all our nursing care it was time to head home for the real healing to begin. He was started on oral antibiotics on Sunday and as long as his fever didn't return on Monday we were good to go. Really, our only benefit of staying in the hospital was that Aaron and I didn't have to do the "deep suctioning." We could leave that to the pros. Let me tell you it is not fun sticking a suction catheter down into your child's lungs. I'm pretty sure it is miserable for all of us who have done it and even though we know the benefit of doing it...it just feels so darn cruel.

Monday started out pretty well. Aaron had been at the hospital with Max all night running his treatments, but there is no rest for the weary. He had to head home and get to work on figuring out how to get us back home. Max was still dependent on his Bi-Pap and we haven't gotten the power inverter installed on the new van yet, so we had no way to power the Bi-Pap en route from the hospital. Aaron had to go get a receiver hitch cargo carrier for the van (yes, dad, I know, you have wanted us to get one for months now) and then he had to strap down the generator on it, so that we could have mobile power. Aaron headed to Harbor Freight with tools in hand to purchase and install it (thank goodness it wasn't the middle of summer). Well, it's not the easiest thing to assemble, especially on only a couple hours of sleep. Thankfully, a gentleman from Iowa (I point this out, because we have seriously only met the nicest people from Iowa) stopped and helped him take care of the whole thing, spending about an hour out of his day to help Aaron.

By the time Aaron made it back to the hospital Max's oxygen was hanging out in the 80s and his respirations were really high again. Clearly, we weren't going to be able to take him home like that. Now I know this sounds rough, but in reality it was great. Apparently, we had really knocked some stuff loose on the last treatment, now we needed to get it out. As I explained to the respiratory therapists, I think of the mucus in the lungs like those Mucinex commercials. I consider them the enemy. He ended up getting deep suctioned four times and then we rolled with another treatment less than two hours later. After the next treatment we were able to get his lungs sounding so much better. It was awesome. He went to sleep with the best numbers in over a week.

Tuesday, we were really ready to go. Max was his spunky self and we were prepared for transport. We were also able to get home much earlier in the day which is better for everyone. Max still didn't want off his mask at all and the doctors told us to prepare for a slow wean back to baseline. Nurse Robin met us at the house to help us get settled and paperwork in order and Nurse Nancy worked last night. Poor Nurse Nancy, by the time she got here at 6pm Aaron and I were so exhausted we could hardly keep the treatment structure straight. Max is on four different nebulizers and his antibiotic has to be given VERY specifically with his g-tube feeds, combine that with some changes in medications and our usual game was off. We have run with treatments every four hours and Aaron and I were able to get some sleep by rotating working the treatments with the nurse.

As always we have learned a lot from the hospitalization and really accomplished quite a bit with fine tuning some of his care and treatments. As luck would have it one of the respiratory therapists is also the rep for Max's CPT vest. He taught us how to reprogram the machine to customize the CPT therapy  for when Max is sick and needs more support. We were also able to get lots of face time with the pulmonary doctor who wants Max in for a sleep study to make sure his Bi-Pap pressures are at the best for him. The PICU attending physician was also great at going over Max's medications in detail and reevaluating and changing some things up based on the latest research. This was one of the first major illnesses with Max's Amino Acid diet and also the first that Max didn't have any digestion issues, coincidence? We think that helped the healing process immensely. There was a lot of talk about Max's Amino Acid diet in the PICU. The biggest thing I think we took from this stay was confidence. Not just because mass is held daily at the hospital and a priest stops by daily and there are morning and evening devotions over the loud speaker (although that didn't hurt), but we really liked all the doctors and the nursing staff. I think respiratory will experience some growing pains in the near future with the new pulmonary doctor and her "new" ways, but it will only benefit us and other families. I guess change isn't so bad after all. Aaron and I would like to see some more equipment for respiratory on the pediatric side, but now we know that when we make donations to Sacred Heart Hospital we can request that they be specifically for respiratory equipment for the children's hospital.

Today was pretty hectic and tiring. Max is definitely feeling better, but we are still doing treatments every 5 hours. He actually spent more time off his Bi-Pap than we expected, but we are working hard to make sure he isn't overdoing it. As always, he sets the timeline regardless of what any doctor says. Aaron and I are trying to not only catch up on sleep, but on all the things that slip to the wayside when living at the hospital (paying bills, doing laundry, cleaning). Thankfully, food has not been one of them. Our AF family has stepped up again to keep us fed for a few days and we are so grateful. Thanks for all the prayers and well wishes, continue to pray for a speedy recovery for all of us.

Here is a picture of Mr. Max "taking a nap." He has that grin on his face that says, sure I'll nap for you, NOT!

Comments

[Robin]

Yeah, that boy was bright eyed and bushy-tailed during "nap" time. But, Max had Mr. Penguin on his feet so he could get a good nap. Because, as we all now know, penguins sleep standing up. I'm positive Mr. Penguin's need to be placed and replaced on his feet was not an excuse for Max to get out of napping ;-)

[Charity]

So glad he is feeling better!