A lot to be Thankful for

It's Mark again, Kate let me take a little break from the blog. Hard to believe Thanksgiving has come and gone already! I will add a disclaimer right out of the gate that I am writing this blog and taking care of Wes simultaneously. For example: I have been trying to write those last 3 sentences for about 35 minutes now...needless to say, this post may be a little disjointed.

I am really super happy to report that Max is feeling better!! He was still battling a fever up until about Saturday morning, but has been doing much better over the last 48-hours. The docs are still very confused by the whole episode. They checked and rechecked every possible thing and everything came back negative...which is great but a little frustrating. The upside (always looking for the positive) is that the fever didn't seem to effect any other part of his body: his respiratory status is unchanged or improved, he continues to do his "business" with ease (maybe "gusto" is the better word), and he continues to gain or maintain his weight (he is on a diet...again). We are ecstatic that the fever seems to have subsided for now, and we certainly feel like we have our baby boy back again (I got no less than 50 smiles out of him yesterday...just not for the camera!!). His oxygen needs have been in the 30% range...a tremendous improvement over, oh the last 8-months or so!! He really seems to have turned the corner on the oxygen side of things and has been below 40% for a good 10 days or so now. Max gets a sizable dose of Viagra (or Sildenafil...for those of you who blush easily) to help treat his pulmonary hypertension (Viagra was originally designed as a blood pressure medication that doesn't work well in adults, but has other "marketable" benefits) and one of the side effects of this dose is that it makes him all hot and bothered. I am not trying to be funny here...he really starts sweating like crazy (he gets the cutest beads of sweat on his upper lip). So the docs wanted to see if they could start to wean the size of this dose to see if that would help alleviate his temperature. Before they could do that, it was time for yet another heart echo. I have lost count but I am going to guess this is heart echo number 15 or so (one of the things I am thankful for is Priority Health!!). In typical Max fashion, the echo showed no real signs of pulmonary hypertension!! What?? I kind of feel like God pulled the old bait and switch on us. Like He gave Max a mysterious fever so we would be distracted while He healed other areas of Max's body. I am not going to question your methods God...just be thankful for them. The high PH was always something that deeply concerned me...much more than I ever let on to anyone. So to say that the heart echo results were very good is an understatement for sure. I feel like a different person since I heard that news, almost like I can just enjoy being with my son instead of worrying about his fragile little heart.

True to my earlier disclaimer, it is now Thursday night and I am just getting back to finishing this post. It has been a busy couple of days. We had Max's vent discharge meeting on Wednesday. This was kind of a big pow wow with everyone that will be involved with Max post NICU, which is to say a LOT of people. There was a number of people from the respiratory practice that will be treating Max after discharge, people from the Early On development clinic, social workers, representatives from the home nursing company, representatives from Carelinc (the company who provides all of our 10 million medical supplies), Dr. Doctor was there, Jason the Physical Therapist who has been working with Max for a number of months, and Nurse Emily and Nurse Ashley (thanks for being there ladies!!). It was kind of overwhelming, but at the same time exciting to talk about Max actually coming home!! We did not get a firm date, but we are tentatively looking at December 21 or 22. I cannot even believe I am writing that. It creates such a crazy mix of emotions: unbelievable excitement about having my family under the same roof, our roof, for the first time in more than 8-months, but at the same time there are a lot of unknowns about how much we do and don't know. I like to think we are ready, but with so many pieces of equipment and so many procedures to know, it is hard not to second guess ourselves.

Here is a picture of the efforts taken to break Max's fever: he is naked except a diaper with cold cloths all over him...not fun.

Please pray with us that Max will continue to do well in the NICU for the next couple of days/weeks. We are still needing him to stay below 40% oxygen, and he was at 39% for the better part of the day. He had a really good blood gas yesterday (7.45 and 47), so they made a vent change, they also increased his sat limits (from 90-100 to 92-100) and took away some of his pulmonary medications. Needless to say, that is a lot of things to change in a few short hours. We are praying that he adjusts to the changes quickly and can get back to the low 30% range again soon.

I have to mention this moment at the vent discharge meeting: We were discussing the amount of Albuterol that Max has been getting, and someone told Dr. S (the pulmonary doc, also, I am not protecting the innocent, just have no idea what his last name actually is...but it sounds like "shoe in") that Max was on 0.5 mg, nebulized. He looked very confused so I repeated that it was 0.5 mg. His response, verbatim, was, "that does no compute." It was 5 mg nebulized. Sorry, I only have a lowly finance degree okay. He might not know how to calculate a Compound Annual Growth Rate right off the top of his head...so there.

Wes is still doing well at home. we continue to have issues with retching and are both feeling like we may need to take some more drastic measures that we hope does not lead to him having to have the Nissin surgery repeated. The first step would be to install an extension that would bypass his stomach completely to give it a chance to fully heal (they think he may have pulled a stitch or something along those lines). If that did not work, then we are back in the OR. The chiropractor seems to be helping with reflux, but the retching seems to be somewhat unrelated in a way. Not what we were hoping for. He is still an absolute joy to have around and has really been a great baby. He was sitting with Nurse Ashley at the vent discharge meeting the other day and was scanning every face in the room. Every time he looked at Kate or I he would smile, then start looking around the room again. What more can a parent ask for?