The dreary weather sort of reflected the mood of the day. We were anxious, I am going to be honest. Titia and I drove to
in a dreadful, never ending thunderstorm. Don’t get me wrong, I love thunderstorms. But on Monday it just sort of seemed to fit the day. The reality of Nicole’s kidney transplant seemed so real. It is easy to talk about it but when the blood starts to flow through the tubes into the vials there is no getting around the reality. Our miracle baby of 6 years ago is going to need a new kidney. Maybe mine! Cleveland
“Daddy is going to get a pokey first.”
“Daddy don’t cry. You can get a band-aid and it will be all better”
“That’s right sissy”
I cannot tell you how often the brief conversation above occurred. We had told Nicole early Monday morning that she was going to get a pokey along with Daddy and Mommy. For the followers of this blog you know by now that a pokey is Nicole’s term for a shot. She knows by now what a shot is. In her anxiety she had decided that I, the daddy, would get the first pokey. But I hate getting pokies, even at 43. But I got it. She wanted to see me (big, brave daddy J) get the first pokey and that would make her stronger. Well, not so much. It all was going according to plan until it was time for her pokey. Putting Nicole in the chair by herself was a total bust. She cried and thrashed about until the nurse suggested I sit in the chair and Nicole sit on my lap. I put her two legs between my two legs and squeezed. Her right arm was wrapped in my arms which were wrapped around her chest. Her left arm was being held by a second nurse while the primary nurse searched for a vein. I squeezed harder as the crying got louder. First try. Praise God the nurse hit the vein on the first try and out flowed the blood. Vial 1, vial 2, vial 3, … several minutes passed by …vial 9 and vial 10. As the blood flowed the crying got less and less and my grip on my baby loosened and loosened. Don’t get me wrong. She was very, very brave and I am very proud of her. Who doesn’t want to avoid a big pokey like this at all cost and her coping mechanism is crying, talking, and flailing around. It is what it is. Titia followed Nicole with her 4-5 vials of blood and we were done. Off the “kits” went to see if Titia or I are a match for Nicole. We will see. Thankfully, there are many more potential donors waiting behind Titia and I who may be a perfect match. The more, the merrier. The better the match…the less the chance of rejection…the less hardship on my girl. It is all about her, as it should be. We will keep you posted.
We went up the elevator to the “oto” guy. Oto is Greek for ear. Nicole has hearing loss as most BOR (branchio-oto-renal syndrome) patients do. It has gotten so bad recently that we have to put Nicole directly in front of us, talk plainly and loudly, and hope she understands what we are saying. We knew it was time to escalate the priority of dealing with the hearing loss. After an examination, Dr. Arnold told us exactly what we knew…Nicole has hearing loss. But we finally had a doctor that understood BOR and the priority that the hearing loss requires. Nicole is going to require hearing aides but right now her hearing loss is being exacerbated by fluid on her ears. Because her ears are formed differently they tend to hold a lot of fluid. Her tonsils and adenoids need to be removed in order to aid in correct drainage of her sinus cavities. This is something that we have some experience with because Nathan had his removed and it really, really helped him. His eating improved, his sleep improved, and his breathing improved. I know removing tonsils and adenoids can be an oft prescribed treatment and is thus a little controversial, but our experience with our oldest was positive. What Dr. Arnold explained, pointing to the diagram of the ear and sinuses on the wall, made perfect sense. Once the fluid is removed from ear, and constantly so, then and only then can a hearing aid with the correct properties be designed. Otherwise, we would be compensating for hearing loss that is caused by fluid which is an ever changing factor. That would create erratic hearing for Nicole which would defeat the whole purpose.
Nicole also has ear pits and a branchial cyst. These “pits” are visible at the top of each ear and in her neck. They are a source of constant drainage and potential infection. They are quite common in BOR patients and along with her ear skin tags were the first signs that tipped off the E-N-T (ear, nose, and throat) doctors at Children’s Hospital in
that Nicole had BOR when she was first born. They are going to remove the ear pits and branchial cyst when she has her tonsils and adenoids removed because the immune system is suppressed so much to avoid transplant rejection that any source of potential infection must be removed. While they are at it they are going to remove her skin tags as well. Cosmetic reasons. Columbus
I have to be honest; I am struggling a bit with the removal of the pits and the skin tags. Every time I look at Nicole and see these visible indicators of her condition I am reminded of her birth, her uniqueness, her special place in this world and in my heart. She is an answer to almost 10 years of praying for a second child and I do not see these so-called imperfections as deficiencies but as a memorial of sorts to her incredible birth and to the awesome answer to prayer that Titia and I received. I suppose other people may see imperfections, but not me. I want to keep them…all of them. However, I understand why they must be removed and their absence won’t change the reality of who my little girl is. It just kind of feels wrong, if you know what I mean. I will get over it, I always do.
Pray for Nicole, in addition to the road being traveled for a kidney transplant she now has to have a 2 ½ hour surgery in 2-3 weeks to have all of this done. We were not planning on this, but here it is. It is like I wrote last week in this blog, “stick in the water”, “stick in the water”, “stick in the water”. I am repeating it to myself to remind me that each week is going to bring an unexpected twist. Right on cue, we have an unplanned surgery. Nicole is going to have to stay the night because of her kidney condition and thus this is not going to be an out-patient procedure. This will make it doubly difficult and we may be calling on some of you to watch kids J.
Nicole has the grace and mercy of God upon her (a declaration of faith), but we still covet your prayers during this process. Pray that these procedures go as smoothly as possible and that Letitia and I will have the wisdom to know how to prepare Nicole for this. These things are never easy, but I am certain, with the Lord’s help, she will do just fine. Ahead of time let me thank you for all of the thoughts and prayers. I will keep you informed through this blog.
For His Glory,