I believe that you can endure a large amount of stress, sadness and disappointment as long as you have a strong hope for the future. A belief that things will get better and that what lies ahead is going to be filled with joy and happiness sustains you when the current day is serving up its fair share of difficulties. And while hope is something that we will never lose and that our faith helps us sustain against the odds, there have been many times when the doctors have given us very little to hope for. The past month has been difficult as we had Max in the hospital all month, Addie's unexpected ICU stay and lingering blood pressure issues and the news that Max's brain had deteriorated. While we definitely did not lose our hope, there were days when it seemed somewhat distant and unfulfilling. With that in mind, it is a great joy to write this post and tell you about all the hope we have been given in the last week for our precious Max. (We also have a confirmed transplant date and lots of hope for Addie but I'll write another post on our transplant plans soon!).
After almost 4 weeks on Hemo, we transitioned Max back to his peritoneal dialysis so he could go back on his home machine. Max was never able to go home on Hemo for some complicated logistical reasons but he actually did really well on it. It was so encourgaing to see him handle both surgery and Hemo so well given it is a stressful procedure and we had been extensively warned of all the things that could go wrong. Max actually had the best month in terms of lack of blue episodes, interactions and general happiness that he has had in months. Not having reflux and a painful hernia have made him a very happy baby and made us very happy parents. And on Monday he was able to come home and so far has settled back in to home life and his machine very smoothly.
While in the hospital Max had a ridiculous number of tests run in hopes of understanding more about what is going on with Max neurologically. It's been this crazy emotional rollercoaster because 6 weeks ago the doctors told us they thought he likely had a progressive genetic condition that would cause both mental and physical deterioration and a reduced life expectancy. Then they got all these genetic tests back and decided he probably did not have a genetic condition which was good news. Then we got the MRI that showed his brain was smaller which was very bad news and made us think it was progressive again. Then they said it might stop shrinking, then they challenged whether that diagnosis even matched. We needed to have a proper meeting with neurology and nephrology (brain and kidney) to put all the pieces together with what we know and work out what it all means. After the last few difficult meetings, I was thoroughly dreading the meeting.
However, the meeting was actually much better than we had expected. An unexpected blessing came from Max's 4 weeks in the hospital. It gave his kidney Dr S a chance to really bond with Max and observe him more and she came to the meeting with much more hope and determination to help Max. It changed the whole tone of meeting to have her advocating for him and believing in what he may be able to do and clearly expressing to our neurologist that Max does have a quality of life (something we obviously knew but to have a doctor say it to the other doctor made a huge difference). We left the meeting confident that Dr S would fight for Max and for us and to ensure we make all the right choices for him. Most excitedly it means that Dr S thinks we should plan to transplant Max at some point. Although that had, of course, always been our plan, the meetings we have had these past two months had started to make that seem not possible and we were very discouraged that Max may not get to transplant. We will be waiting at least another year and probably longer because transplant does pose a lot of risks to Max but at this point, it is our plan to give Max Al's kidney and we have a doctor who plans to support us in that.
The other significant thing that came from the meeting is that the neurologist does not believe Max's brain cells are not actually dying but rather not growing or developing. This gives the appearance that Max's brain is shrinking since his head and some parts of his brain are continuing to grow. But in reality he does not actually have less brain matter, he just doesn't have more when he should. And while the fact that his brain is not growing is not good news, it is better than his brain actually shrinking. Especially because while the neurologist does not necessarily think Max will gain a lot of skills, he also does not expect Max to lose the skills he has. Which means Max will continue to recognize us, smile his infectious huge smile, coo and express himself and enjoy music and toys. And for us that is huge. And it fills us for hope that Max's life will be filled with happiness and a love for us and an awareness that he is fiercely loved by us. And while I will admit that hearing the doctors predict that Max is likely to never walk or talk was very sad, we believe that his capacity for love and joy is the most important thing so we rejoice that God has given these gifts to Max in abundance.
The neurologist also admitted he's been wrong before and that innovative therapies can make a big difference with kids like Max. Max loves music therapy and occupational therapy and we are going to keep getting him lots of therapy and keep training his brain to find new pathways and new ways of doing things. So we walked away from yesterday with a lot of Hope- hope for a kidney for Max and freedom from his machine in time, hope that he will continue to know, love and interact with us and hope that with a lot of therapy he may develop more skills. He will always be medically fragile and there always be lots of reasons to worry about Max but we are choosing to live by hope for him and we feel blessed that his doctor S shares hope for him and that we are fighting for the very best quality of life for him!
Thank you so much to everyone who has been praying for Max, coming to see Max, sharing in our sadness and joys over the past couple of months. We have felt very supported and we know that Max is loved by many many people including many who have not even met him! We know that there will be highs and lows and scary times in our journey with little man Max and we are grateful that we have our families and friends who are walking alongside us every step of the way.