A little update on Felix . . .
(I provide an explanation of his condition here . . .)
We’ve been in the London Children’s Hospital for four weeks now. Felix is six weeks old. It feels like we’ve been living a whole different lifetime.
Before Christmas, Felix finished his rounds of intense antibiotics for the infections in his lungs and bladder. It was wonderful to have his IV out again — he was down to just oxygen prongs in his nose (as seen in the picture above), which made holding and cuddling him so much easier. None of his symptoms were worsening, so we were just coasting for a few weeks. His breathing and crying still sounded a bit coarse on and off, and he still needed a bit of oxygen, but neither of those issues was overly concerning. It’s typical of SCID-ADA babies to need a bit of oxygen until they start treatment. The main lingering concern was his feeding . . . he still wasn’t eating enough to gain a good amount of weight, but it was okay enough that we weren’t taking action, and this is also pretty common among SCID babies.
So for a while there, Felix had no new tests and no new treatments . . . we were just staying in isolation in the hospital to prevent exposure to germs, and waiting for the paperwork to go through for him to start his enzyme replacement therapy (what I’ve also been calling ADA injections, or PEG-ADA). This treatment is enormously expensive, and there is a lot of paperwork to be done before the hospital can cover it and start administering it. We’ve been waiting and praying for this process to finish up, as we are very hopeful that we will see huge improvements in his overall health when he starts — to the point where he might even be able to come home in a few weeks.
Things took a slight turn for this worse this morning. Repeat chest x-ray last night showed some slight abnormalities (streaks) in his lungs, and his oxygen saturation levels were getting a bit lower, requiring more oxygen. However, he wasn’t showing any other signs of infection. After almost a full day of deliberation, the doctors decided that perhaps he was getting milk in his lungs when he drank, which could explain a number of things, including the streaks in his lungs.
So today Felix had to go through all kinds of awful things again . . . nasal swab, throat swab, blood cultures, urine samples, a new IV with new antibiotics, and a feeding tube. Fortunately we have amazing nurses and they were able to do all the in the span of half an hour. The doctors are on the alert for any viruses or bacteria that might show up in his tests, and his sucking and eating patterns will be assessed by specialists to see if they can figure out the source of the abnormality in his lungs.
So new he’s all tangled up in tubes and wires again. He won’t be able to take food orally for a while. I absolutely hate the thought of more antibiotics in his poor little body, ravaging his intestines. Picking him up and holding him is quite the task.
But at least he still seems fairly comfortable, and doesn’t show any strong signs of illness.
We also got the disheartening news that the paperwork for the enzyme therapy has been stalled . . . they’ve run into bumps with the funding. The sooner he can get treatment, the sooner he can get better and come home, but red tape is getting in the way. We hope we don’t have to wait for months to get it sorted out.
So that’s where we’re at. Waiting for results, waiting for funding, hoping and praying for improvement.
If you’re so inclined, please pray that the paperwork goes through and we can start treatment as soon as possible. Also, in the meantime, pray that none of his symptoms get worse. I also feel sick with worry that his gut will never recover from the formula and the antibiotics — two things I know can be devastating to lifelong gut health — so please pray that both he experiences healing with time and that I don’t waste energy on useless worry.
Thanks so much. I intend to provide more updates on life in general when I get the chance.
Your continued love and prayers mean more to me than you know.
If it helps at all, though the situations are really similar. Henry was a formula baby (so was I) who got more antibiotics in his first two years than I really had hoped (so did I when I was his age due to ear infections). Both of us are quite healthy…. in fact despite being a formula eating, antibiotic having, daycare in kid, he’s been more resilient to illness than most of his counterparts. I know it’s a hard part for you…. but just wanted to throw it out there in case it might help =)
Praying that the red tape breaks soon.
Sending love from North Carolina. Prayers for you and Felix – joy and shalom as well. Praying that paperwork goes through quickly and solutions roll out that will quickly resolve his condition.
My kid who was partly formula fed seems healthier so far than my kid who was EBF. Many prayers for Felix!
Absolutely praying on everything you mentioned, and more!
Will do, Kathleen.
Thanks for the update. Fingers crossed that the paperwork goes through quickly. (Although, I am so glad that you are in Canada and not having to pay for this yourself!) Thinking about you all!
Look at that FACE!!! What an adorable sweet boy. I just love the depth in his eyes. As difficult as all of this is right now, know that he’s got the soul of God shining thru him to you, and you will find your way together.
Much love and prayers to all of you and your Sweet Lydia, who must be missing you as much as you are her. Many Blessings on your family and friends as they support you and the Drs and nurses to provide that excellent care (what an awesome world we live in, knowing that despite the chaos, there are options). A BIG nudge to the red tape machine to get out of the way. And of course, many prayers to steady you… Peace.
Praying for Felix! And his gut can and will be recovered from this. It will take time and vigilance, but God gave him to you because you are best suited to help him through this ordeal. You have the knowledge, wisdom, and strength to heal him when he’s out of the hospital. I know he’ll be well!
You and your darling boy are in my prayers.
He is beautiful!
Praying for you; your family comes to my mind daily, and though we are far and have never met, a mother’s heart for her children is universally understood.
Praying for him! All my babies had to be formula fed and none have tummy issues, I hope that is comforting! He is so adorable Kathleen, your family is in our constant prayers!
We’ve all been thinking and praying you and your family. Praying for all the paperwork to move quickly, and the red tape goes away. I know that staying in the hospital is not easy for you or your family, but God gives us strength to go.
Dear Kathleen and Family,
I have been reading your blog for a while and just found this recent post on your baby and all he is going through. I was moved to tears reading his and your situation as it reminded me of where i was exactly a year ago with my daughter Maud. She has cancer of the retina and we spent a week or so over new years last year in isolation fighting an infection post chemo. In those moments when you look down on your baby and your worst fears are allowed to run through your mind, I found it useful to tell these thoughts to STOP (I used to say this out loud) and remember that you are in the best place for him, and you are doing your best, loving him is the best and only thing you can do. Sending you so much love x
Lots of prayers for you. Look at that adorable, alert face! Just a thought, though I’m sure the folks at the hospital have discussed this: is there any way you can pasteurize or sterilize your own pumped milk? My kids have had both, so I definitely think Felix will thrive on formula, but given how important it is to you, perhaps worth asking?
Continued thoughts and prayers going out to you from Baltimore, MD.
I’m praying specifically for the paperwork to go through. Every time I think of it. Every time I check the mail or sort a pile or move a magazine from the table to the counter, Felix’s paperwork is on my heart. Hang in there, Kathleen…we are holding you in the Light.
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Felix is so beautiful. You are amazing. We will keep praying for this new treatment. Xx becca
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Felix is adorable. I am so sorry that you cannot mother him the way you planned and the way you would prefer. I hope you are able to soon.
Praying for Felix and you all. Our son Kasch is kicking SCID butt and wanted you to know to have the faith. Kasch had a BMT at almost three months old from an unrelated donor on 12/04/12 and today we just came home from Boston Children’s Hospital with more great news that he is well! Please email me if you need to just vent! You all are doing great, it takes time, dedication & a crap ton of tears but you got this. All our love from CT.