It has been a rough week or so since I last wrote you and updated our blog. The beginning of last week was actually a wonderful break in the normal challenges that our boys face, as I recounted in my November 11th posting. It is terrible but when they have good days I’m conditioned to thinking, “is this a lull before the storm?” Indeed last Wednesday both boys started clinically showings signs of becoming ill. Jonah was really listless last Thursday and his color started to change, Noah’s color also started changing but he became really agitated and it didn’t take long for blood work to show that both were developing infections. Noah has staff and Jonah a nasty bacteria infection. We spent 48 hours on pins and needles waiting to hear back if either were what they call MRSA, Methicillin-resistant Staphylococcus aureus, a bacterium responsible for difficult-to-treat infections in humans. Many of you are probably familiar with MRSA as there have been several outbreaks of this “super bug” in hospitals across the nation, especially with those requiring long term care in hospitals.
Thank goodness both turned out to be regular infections but both are very serious. There actually are about 4-5 babies with the MRSA staff and we thought for sure Noah would develop the same but he has been spared of this, however they are nervous because his infection is in his blood stream and they worry about meningitis with premature babies when infections develop in the blood. Noah was reintubated as he no longer was able to tolerate the CPAP, he just did not have the energy to breathe on his own. That was such a disappointment as he had worked so hard and we had gone through with consent on the steroids hoping it would be a permanent transfer to the CPAP and that we wouldn’t have to discuss steroids again. I keep praying after he recovers he will slowly wean himself down to being back on the CPAP without a second round of steroids.
Jonah’s bacteria infection is severe and he still has not started reacting well to antibiotics. Yesterday we had the infectious disease group in to see our baby to exam him and make changes in his medications. They are also worried that he has developed meningitis because of his reservoir and because he has not started to recover from being on antibiotics for almost a week. Preliminary blood work didn’t show anything terribly abnormal but they did find a decrease in his glucose from a spinal fluid sample taken from the reservoir in his head and this has them worried. So now we are waiting over the next few days to see if the culture grows any bacteria. If so then they will prolong his antibiotic treatment in hopes to help him recover from the meningitis.
I fear terribly that he has developed meningitis. I know how bad this is as we were told early on that infections in the brain can have severe outcomes and with his prognosis already being so poor in way of normalcy it is hard for me not to give up all hope that he could have minor disabilities from this horrible experience of being so premature.
I do try and keep reminding myself that God is the ultimate physician and all things are possible in his hands but sometimes it is just so easy to give in to the negative, especially when the physicians here can be so negative in their predictions.
Yesterday, one of the on call doctors (thank goodness he isn’t the primary care physician for the boys) was very rude to me and in front of a visitor, a sister who came from my Bakersfield church ward to see the boys. His comment to me was that the boys middle names should be changed to “disaster” because they always had one issue or another and seemed to dislike being stable. I told him the comment was unkind but his response was he merely meant to say they aren’t remaining stable, etc. Thank goodness they have patient advocates here and I filed a complaint as well as with the charge nurse who delivered a written statement to the director of the unit. I have had similar negative and unprofessional comments made by this same doctor and I’ve let them go in the past but yesterday was so shockingly unkind that I took the time to make a point that neither my sons nor I will be dealt with in such a calloused manner.
Thank goodness all that I reported the incident too agreed and apologized profusely.
It really is amazing to see how many great and caring doctors there are here and then you run into a few bad apples that just really sour the experience. Like I said, thank goodness he is not the boys’ regular physician and after yesterday I am sure if we see him again in the future he will be much more professional in manner.
I am grateful my dad has been with me throughout this month; it helps to have company as you aren’t left with much time to think over the reality of the situation. My mom flew in yesterday and my baby sister will also be driving into Fresno from Los Angeles for Thanksgiving on Thursday. Thank goodness for family.
Continue praying for both boys. They seem to go from one challenge to another and unfortunately that is the journey of premature children. I am amazed every day though at how much they can do for both boys. They both are miracles, the fact that they were able to survive at such an early gestation is nothing short of a miracle. They only had a 50% survival rate and every day we have with them is nothing less than the hand of God keeping them here.
Thank you for your continued prayers and concern and please keep praying, fasting and thinking of them often. They need your support as well as Shane and I.
We will continue to keep you posted as time provides.
Happy Thanksgiving and God bless each of you,
Shane and Michelle