Updates from Texas Children’s Hospital with Low Pulse Oxygen
On Thursday, February 15, 2018, we went to our pre-bone marrow transplant consult at Texas Children’s Hospital in the Houston, Texas medical center. While we were there, a low pulse oxygen reading led to Kolt being admitted into the hospital, and a chance for the doctors to begin digging around in order to find out the cause of low pulse O2 in an non-distressed infant. The initial viral swabs came back negative for everything except Rhinovirus (common cold). Rhinovirus does not typically associate with a low O2 level which led to a lot of questions that need to be answered.
In addition to the viral tests, yesterday a chest x-ray was ordered to see if there was anything to be concerned about. The initial description from the x-rays was some inflammation, but nothing crazy, and someone commented that the “heart looked a little large, which could be from inflammation, or something else.. we are still waiting on radiology to confirm.” Since there did not appear to be a cut and dry answer as to why the pulse O2 was in the 80’s, and the chest x-ray didn’t show anything significant, it was decided to do a chest CT (cat scan) and an echocardiogram of his heart. If you remember about 10 blog posts ago (or back in February 2017, depending on how you track time), the original en utero bone marrow transplant that we did involved injecting the stem cells into Kolt’s heart. Due to his fetal medical history, we were all interested in seeing if anything showed up on the echo test, especially since everything in the heart continues to appear to be working normally. The results from the echo were normal, which rules out a cardio-based problem with his low O2 levels.
The chest CT was performed with contrast in order to see the possible effects of PCP PJP (Since we moved to the Allergy/Immunology Pulmonary department, the acronym changed. For riveting information regarding the acronym change, as well as how to identify it with patient examples, there is a lengthy discussion about it here. (If you click the link and realize that PJP is the most common opportunistic infection with someone that has AIDS, do not fret about Kolt having AIDS.) The CT did reveal that he has the typical “ground glass pattern” that is the principle finding in PJP. Additionally, there was some edema and inflammation. The treatment will include a 21 day hospital stay wherein he will receive daily antibiotics in order to get the lungs working like normal again. Short term steroid use will also be needed to lessen the effects of die-off from the infection. This is the course of action needed for an immuno-compromised individual with Hyper IgM syndrome since his immune system is not able to recognize the infection, and learn/adapt in order to kill it off like an “immune-typical” person could. The whole purpose of the bone marrow transplant would be to allow his body to be able to fight off something like this on its own, which is currently is unable to do.
The good news regarding the current findings are as follows:
- Kolt continues to act really well, and has no symptoms other than low O2 readings. When I was there this morning, the 2 pulmonologists that came in basically said they might as well be doing well checks since all outward appearances, including listening to his lungs with the stethoscope appear to be normal.
- There is a moderate to decent chance that we may not have to push back the bone marrow transplant. Since the original concern, and rational for postponing the transplant was a viral infection (and they have not been able to identify one), there is discussion that we can continue as planned. Not official though, and will probably be a “game time decision.”
- Our niece (Stephanie’s sister’s daughter) was able to arrange her schedule to come help out at the house with school/kids/etc while I go to work. We have been in talks with her about coming out in March, but due to the current situation, she worked some things out, and will be coming sooner. We also have an awesome young lady from church that has been coming over to help out with the kids. She has made herself available as a resource for our family, and the kids love her.
There are still a few unknowns, and there is even a possibility that Stephanie and Kolt will be in the hospital for three months straight (21 days of antibiotics, followed by an immediate room change to the bone marrow transplant department), but that is still up in the air. We feel tremendously blessed with all that has gone on so far, and look forward to completing the process. Thank you for your prayers, thoughts, and well-wishes. I will continue to update everyone as we know more. As always, if you want to read the whole story, you can start here: Blog Post #1, Post 2, Post 3, Post 4, Post 5, Post 6, Post 7, Post 8, Post 9, Blog 10, Blog 11.
